Rheumatoid Arthritis Lupus | Lupus FAQ

Question:

On Mon, 3 Mar 2003 19:44:47 +0000, Andy <a…@kitzbuhel.demon.co.uk> wrote: >One of many is: >"Damned Lies and Statistics" by Joel Best >- Untangling Numbers from the Media, Politicians, and Activists >Publication Date: May 2001 >199 pages, Uni of California Press, 0-520-21978-3

hmm.. the one I’m thinking of was available at my university bookstore in 1992. But this could be a reprint. >The original phrase is attributed by Mark Twain to Benjamin Disraeli; >but you knew that

nah – but I’ll pretend I did ’cause I’m just so smart. :-)

Response:

On 3 Mar 2003 16:42:34 -0800, Heat…@darkknight.tv (Heather) wrote: >KC, >My mom suspects that my grandma also had Lupus, although the doctor >would not do the test becasue she was dying of eveything else. I >think that we will eventraly find out that it is more "in the family" >then I would like, being that I have an 8 year old little girl.

If it’s any consolation, though my daughter does have hypothyroidism… she as yet, shows no signs of any major autoimmune disease. Thus far, nor do either of my nieces <fingers crossed> Hugs, kcat

Response:

On the FM with Lupus topic, in doing my own research and speaking to my docs I have discovered that many believe (in the medical community) that FM is brought on by living with chronic illness such as Lupus – and it doesn’t matter if you were dx’d or not because you would still have your symptoms. My Nutrionalists has a very intertesting theroy on how my sle and fm work together to reak constant havic in my system. The visuals I got from his description was almost too much, sometimes, ignorance is bliss (NO I DO NOT REALLY BELIEVE THIS:) On the subject of grandparents my docs have all but concluded that my grandma on moms side died of complications from Lupus some 25 odd years ago. She died of a ruptured spleen without in trama or severe infection. The docs explained that if her lupus went unchecked that is exactly what they would expect to happen…. interesting. My mother and sister have been run through the criteria and nothing so hopefully it will stay that way. My daughter on the other hand, who is 5 shows a few symptoms that concern me including fatigue for someone her age and a butterfly rash that is all to familiar. I had already asked Ped to run her through juvi lupus criteria and her calmed me down and I let it go. This has been years now with the rash I am going to insist. God let my baby girl be fine please. Nicole Austin, Tx – Hide quoted text — Show quoted text -KC <kca…@newsguy.com> wrote in message <news:ap586vgkma6ai7pp0c8u417v7feal0i00q@4ax.com>… > On 3 Mar 2003 16:42:34 -0800, Heat…@darkknight.tv (Heather) wrote: > >KC, > >My mom suspects that my grandma also had Lupus, although the doctor > >would not do the test becasue she was dying of eveything else. I > >think that we will eventraly find out that it is more "in the family" > >then I would like, being that I have an 8 year old little girl. > If it’s any consolation, though my daughter does have > hypothyroidism… she as yet, shows no signs of any major autoimmune > disease. Thus far, nor do either of my nieces <fingers crossed> > Hugs, kcat

Response:

On the FM with Lupus topic, in doing my own research and speaking to my docs I have discovered that many believe (in the medical community) that FM is brought on by living with chronic illness such as Lupus – and it doesn’t matter if you were dx’d or not because you would still have your symptoms. My Nutrionalists has a very intertesting theroy on how my sle and fm work together to reak constant havic in my system. The visuals I got from his description was almost too much, sometimes, ignorance is bliss (NO I DO NOT REALLY BELIEVE THIS:) On the subject of grandparents my docs have all but concluded that my grandma on moms side died of complications from Lupus some 25 odd years ago. She died of a ruptured spleen without in trama or severe infection. The docs explained that if her lupus went unchecked that is exactly what they would expect to happen…. interesting. My mother and sister have been run through the criteria and nothing so hopefully it will stay that way. My daughter on the other hand, who is 5 shows a few symptoms that concern me including fatigue for someone her age and a butterfly rash that is all to familiar. I had already asked Ped to run her through juvi lupus criteria and her calmed me down and I let it go. This has been years now with the rash I am going to insist. God let my baby girl be fine please. Nicole Austin, Tx – Hide quoted text — Show quoted text -Heat…@darkknight.tv (Heather) wrote in message <news:adc2ccd2.0303022126.25371029@posting.google.com>… > Hi everyone warm wishes to you all, > I come to you this evening with a couple of questions. > 1. My mom has SLE and I now have discovered I have it as well. Is that common? > 2. How often do people diagnosed with FM later get diagnosed with Lupus? > I am asking because in my case and in my mom’s case FM was the first diagnoses. > I guess I am just curious if anyone else has had similar experance. > BTW – my spelling leaves a lot to be desired (sorry in advance) > Thank you, > Heather

Response:

well i was told my be daughters rheumatologist that Fm and Lupus can run hand in hand, my daughter was diagnosed with lupus first and then FM. As far as heredity, they say you cannot inherite lupus, but a susecptability to auto immune diseases. There have been many studies, where only one identical twin has lupus and not the other, so ther eis definitly something to the therory that something enviornmental may have to trigger the lupus in someone. We suspect that my grandmother who died when my dad was ten, may have had lupus and no one ever knew it. she has RA and a few other conditions as well. My mother and father both have an autoimmune condition, dad has thryroid mom has diabetes, my daughter has lupus yet i have nothing. So it is hard to tell who in the fmaily may get lupus and who may get something else or nothing. I have researched a few things i think may have been the trigger to my daughters lupus, including mycoplasma which my daughter had right before she started coming down with lupus symptoms. hope this helps. Jaicee Hi everyone warm wishes to you all, I come to you this evening with a couple of questions. 1. My mom has SLE and I now have discovered I have it as well. Is that common? 2. How often do people diagnosed with FM later get diagnosed with Lupus? I am asking because in my case and in my mom’s case FM was the first diagnoses. I guess I am just curious if anyone else has had similar experance. BTW – my spelling leaves a lot to be desired (sorry in advance) Thank you, Heather

Response:

i posted before, but i forgot to mention a fmaily we met at camp sunshine this past august who lives in oklahoma. The omther, and the five children, tow of them identical twins, all have lupus. They are a rarity indeed, but i thought id mention it. Jaicee My family is also a "cluster." My brother and I both have lupus, his daugther has suspected lupus, my cousin has rheumatoid arthritis. I also have heard that there is a family I grew up with, and now all three of the siblings have come down with lupus. Makes you wonder about the virus theory…. Hope its not somethin’ in the water! Mary "Heather" <Heat…@darkknight.tv> wrote in message

news:adc2ccd2.0303022126.25371029@posting.google.com… – Hide quoted text — Show quoted text -> Hi everyone warm wishes to you all, > I come to you this evening with a couple of questions. > 1. My mom has SLE and I now have discovered I have it as well. Is that common? > 2. How often do people diagnosed with FM later get diagnosed with Lupus? > I am asking because in my case and in my mom’s case FM was the first diagnoses. > I guess I am just curious if anyone else has had similar experance. > BTW – my spelling leaves a lot to be desired (sorry in advance) > Thank you, > Heather

Response:

My grandfather had lupus before dying in WW2 (and had heart valve disease so perhaps had Hughes although it was not discovered then) , My dad had lupus and Hughes syndrome and died in 1996. I have lupus and Hughes as well… my sister is fine!! Bummer, huh :) Lyndal "CQDMGYJC" <cqdmg…@aol.com> wrote in message

news:20030306172204.15430.00000031@mb-fc.aol.com… – Hide quoted text — Show quoted text -> i posted before, but i forgot to mention a fmaily we met at camp sunshine this > past august who lives in oklahoma. The omther, and the five children, tow of > them identical twins, all have lupus. They are a rarity indeed, but i thought > id mention it. > Jaicee > My family is also a "cluster." My brother and I both have lupus, his > daugther has suspected lupus, my cousin has rheumatoid arthritis. I also > have heard that there is a family I grew up with, and now all three of the > siblings have come down with lupus. Makes you wonder about the virus > theory…. > Hope its not somethin’ in the water! > Mary > "Heather" <Heat…@darkknight.tv> wrote in message > news:adc2ccd2.0303022126.25371029@posting.google.com… > > Hi everyone warm wishes to you all, > > I come to you this evening with a couple of questions. > > 1. My mom has SLE and I now have discovered I have it as well. Is that > common? > > 2. How often do people diagnosed with FM later get diagnosed with Lupus? > > I am asking because in my case and in my mom’s case FM was the first > diagnoses. > > I guess I am just curious if anyone else has had similar experance. > > BTW – my spelling leaves a lot to be desired (sorry in advance) > > Thank you, > > Heather

Response:

- Hide quoted text — Show quoted text -KC <kca…@newsguy.com> wrote in message <news:gg176vcqbv0r8fa7vmrr93iqtedrf4jtjm@4ax.com>… > On 2 Mar 2003 21:26:27 -0800, Heat…@darkknight.tv (Heather) wrote: > >Hi everyone warm wishes to you all, > >I come to you this evening with a couple of questions. > >1. My mom has SLE and I now have discovered I have it as well. Is that common? > as others have said – the statistics imply it’s not that common. > however, "Lies, Damn Lies and Statistics" :-) (I believe a > statistician actually published a book with that title.) > IMO, the more I see of people with lupus, the more I see of *families* > with lupus and other autoimmune disease. The thought is that it’s more > likely one or more of your family members will have some other form of > AI disease. But I’m betting that as diagnosis methods improve we’ll > find that the odds to be "better" than that, unfortunately. > My sister has SLE, my mother has Sjogren’s, I have either UCTD or > "Incomplete LE". both are autoimmune diseases that have typical lupus > symptoms and require the same treatments but both lack the extensive > blood tests that rule in SLE.

KC, My mom suspects that my grandma also had Lupus, although the doctor would not do the test becasue she was dying of eveything else. I think that we will eventraly find out that it is more "in the family" then I would like, being that I have an 8 year old little girl. – Hide quoted text — Show quoted text -> >2. How often do people diagnosed with FM later get diagnosed with Lupus? > I don’t think this is known yet but I wouldn’t be the least bit > surprised to find that it’s a rather large percentage (significantly > larger than the number of people without FM that later get diagnosed > with lupus.) Not that one "leads" to the other. And FM is not an > autoimmune condition – at least not as currently described. But that > FM might be one of many symptoms that is seen before lab tests can > confirm SLE. > KCat > Alt.Support.Lupus Frequently asked Questions (FAQ) > http://www.ghg.net/schwerpt/aslfaq30.htm > My Lupus Pages > http://www.ghg.net/schwerpt/mypage.htm

Response:

On 2 Mar 2003 21:26:27 -0800, Heat…@darkknight.tv (Heather) wrote: >Hi everyone warm wishes to you all, >I come to you this evening with a couple of questions. >1. My mom has SLE and I now have discovered I have it as well. Is that common?

as others have said – the statistics imply it’s not that common. however, "Lies, Damn Lies and Statistics" :-) (I believe a statistician actually published a book with that title.) IMO, the more I see of people with lupus, the more I see of *families* with lupus and other autoimmune disease. The thought is that it’s more likely one or more of your family members will have some other form of AI disease. But I’m betting that as diagnosis methods improve we’ll find that the odds to be "better" than that, unfortunately. My sister has SLE, my mother has Sjogren’s, I have either UCTD or "Incomplete LE". both are autoimmune diseases that have typical lupus symptoms and require the same treatments but both lack the extensive blood tests that rule in SLE. >2. How often do people diagnosed with FM later get diagnosed with Lupus?

I don’t think this is known yet but I wouldn’t be the least bit surprised to find that it’s a rather large percentage (significantly larger than the number of people without FM that later get diagnosed with lupus.) Not that one "leads" to the other. And FM is not an autoimmune condition – at least not as currently described. But that FM might be one of many symptoms that is seen before lab tests can confirm SLE. KCat Alt.Support.Lupus Frequently asked Questions (FAQ) http://www.ghg.net/schwerpt/aslfaq30.htm My Lupus Pages http://www.ghg.net/schwerpt/mypage.htm

Response:

drink wine or beer, stay away from the water!! LOL W "Mary T. Rawle" <stin…@earthlink.net> wrote in message news:FZK8a.599$gF3.75170@newsread1.prod.itd.earthlink.net… – Hide quoted text — Show quoted text -> My family is also a "cluster." My brother and I both have lupus, his > daugther has suspected lupus, my cousin has rheumatoid arthritis. I also > have heard that there is a family I grew up with, and now all three of the > siblings have come down with lupus. Makes you wonder about the virus > theory…. > Hope its not somethin’ in the water! > Mary > "Heather" <Heat…@darkknight.tv> wrote in message > news:adc2ccd2.0303022126.25371029@posting.google.com… > > Hi everyone warm wishes to you all, > > I come to you this evening with a couple of questions. > > 1. My mom has SLE and I now have discovered I have it as well. Is that > common? > > 2. How often do people diagnosed with FM later get diagnosed with Lupus? > > I am asking because in my case and in my mom’s case FM was the first > diagnoses. > > I guess I am just curious if anyone else has had similar experance. > > BTW – my spelling leaves a lot to be desired (sorry in advance) > > Thank you, > > Heather

Response:

In article <gg176vcqbv0r8fa7vmrr93iqtedrf4j…@4ax.com>, KC <kca…@newsguy.com> wrote [ >however, "Lies, Damn Lies and Statistics" :-) (I believe a >statistician actually published a book with that title.)

One of many is: "Damned Lies and Statistics" by Joel Best - Untangling Numbers from the Media, Politicians, and Activists Publication Date: May 2001 199 pages, Uni of California Press, 0-520-21978-3 The original phrase is attributed by Mark Twain to Benjamin Disraeli; but you knew that -- Andy [Chair, N E Lupus Group] See http://www.kitzbuhel.demon.co.uk/lupus for more!

Response:

> Where is TV Heather, for some reason I keep picturing an island somewhere. (don’t > mention specifics though, that’s for KC’s list if you want to put be on it). > Is there a local Lupus Chapter where you are? > Anyhow glad you posted and let’s see what the others say about your questions. > Big hugs > J

Thank you for the info. .TV is my husbands production company. Gave me a e-mail address of my own Heather

Response:

I don’t think there are a lot of families that have exactly the same illnesses. My mother has psoriasis/rheumatoid arthritis, my sister has discoid Lupus,I have some of everything except not the psoriasis. Plus a multitude of other things.Wende "Heather" <Heat…@darkknight.tv> wrote in message

Response:

My family is also a "cluster." My brother and I both have lupus, his daugther has suspected lupus, my cousin has rheumatoid arthritis. I also have heard that there is a family I grew up with, and now all three of the siblings have come down with lupus. Makes you wonder about the virus theory…. Hope its not somethin’ in the water! Mary "Heather" <Heat…@darkknight.tv> wrote in message

Response:

Hi everyone warm wishes to you all, I come to you this evening with a couple of questions. 1. My mom has SLE and I now have discovered I have it as well. Is that common? 2. How often do people diagnosed with FM later get diagnosed with Lupus? I am asking because in my case and in my mom’s case FM was the first diagnoses. I guess I am just curious if anyone else has had similar experance. BTW – my spelling leaves a lot to be desired (sorry in advance) Thank you, Heather

Response:

Heather wrote: > Hi everyone warm wishes to you all, > I come to you this evening with a couple of questions. > 1. My mom has SLE and I now have discovered I have it as well. Is that common? > 2. How often do people diagnosed with FM later get diagnosed with Lupus? > I am asking because in my case and in my mom’s case FM was the first diagnoses. > I guess I am just curious if anyone else has had similar experance.

Hello Heather, Your spelling is just fine. Looks like you are one of the ten percenters mentioned here http://www.ghg.net/schwerpt/aslfaq30.htm#inherit Although the risk to the child of a lupus patient developing the illness is somewhat greater compared to the general population, the likelihood of SLE in the child remains low (approximately 2% for boys and 10% for girls). <end> As to your other question, there’s a number of (my) thoughts: 1) Fibro is secondary to a diagnosis waiting to happen 2) You’ve had Lupus for a while but the bloodwork, signs and symptoms didn’t quite fit the criteria of the doctor, so he called it Fibro 3) You’ve had Lupus for a while, and they’ve been carefully watching you for more troublesome but treatable signs/symptoms, not wanting to give you *the* diagnosis in case it upset you, or affected your insurance, work or other. But have now decided to tell you. 4) You have both Lupus and Fibro. Where is TV Heather, for some reason I keep picturing an island somewhere. (don’t mention specifics though, that’s for KC’s list if you want to put be on it). Is there a local Lupus Chapter where you are? Anyhow glad you posted and let’s see what the others say about your questions. Big hugs J

Response:

In article <adc2ccd2.0303022126.25371…@posting.google.com>, Heather <Heat…@darkknight.tv> wrote >Hi everyone warm wishes to you all, >I come to you this evening with a couple of questions. >1. My mom has SLE and I now have discovered I have it as well. Is >that common?

No – 10 to 1 against.. As I read The Lupus Book pp39-40, given that your mother has lupus, the chance of you getting it is 10-15%, and the chance of you getting some other autoimmune disease is also 10-15%. [ >BTW - my spelling leaves a lot to be desired (sorry in advance)

10/10 so far -- Andy [Chair, N E Lupus Group] See http://www.kitzbuhel.demon.co.uk/lupus for more!

Response:

Posted in Rheumatoid Arthritis Lupus | No Comments » |

Myositis

Question:

J <StrangeAdva…@example.com> wrote in message

news:3E47E4BD.EADE2259@execulink.com… > Go away Tom,

I am going to ask you nicely to stay away from me .. Stay away from me .. please . > Lupus and associated disorders are way too complex for you.

I have more of a medical education in regards to this disease than you. YOU .. ‘have’ it .. and THAT is YOUR ‘claim to fame’ in regards to this disease. > and you could kill someone with your ideas.

Explain .. or shut up .. > And the Canadians here could sue you.

They could could they .. Let’s have a go then .. eh .. Keep your threats to yourself .. I may take umbridge .. and THAT you wouldn’t like .. Who loves ya. Tom — Jesus Was A Vegetarian! http://jesuswasavegetarian.7h.com Man Is A Herbivore! http://pages.ivillage.com/ironjustice/manisaherbivore

Response:

"Sherry" <hurst…@NoSpam.invalid> wrote in message

news:sER1a.501$5H6.42270880@newssvr21.news.prodigy.com… > Or to brush your hair, use a blow dryer, curling iron, or do anything that > resembles putting on your face and looking like you took some time to look > "nice"!

Ha! I didn’t even think of those things… I am such a slob..gave up primping and preening years ago. BTW I blow dry my hair with my head *down.* It adds fullness to the hair, plus you don’t have to hold your arms up. mary – Hide quoted text — Show quoted text -> Sherry > "Mary T. Rawle" <stin…@earthlink.net> wrote in message > news:9oQ1a.9259$1q2.912970@newsread2.prod.itd.earthlink.net… > > Me too. Well, myalgia. I am diagnosed with "arthralgias and myalgias." > > I have trouble most noticably holding my arms up, such as holding my > > binoculars to watch the birds, or to play guitar or wash the dishes. > > Mary > > "Grace Casselman" <gr…@casselman.net> wrote in message > > news:3E4709EC.4A1B033F@casselman.net… > > > So, apparently my biggest Lupus issue is muscle inflammation/weakness, > > > also called Myositis. > > > Who else out there has this? > > > Here are a couple good URLs on it: > > > http://www.orthop.washington.edu/arthritis/types/myositis/02 > > > http://www.myositis.org/ > > > Grace.

Response:

ironjustice wrote:

Response:

That describes me as well. And as someone else said – it is roving. It is constant in my knees and up my thighs. Sometimes as weird as it sounds, my buttocks ache. Sometime my upper arms, hip, shoulders, feet. I have problems sleeping because I ache worse lying in bed. Now this darn eye thing. I did call and the eye doctor wanted to see me tomorrow morning. (He was in surgery all day today, but I at least got a call back from his office!) On Mon, 10 Feb 2003 04:07:43 GMT, "Sherry" <hurst…@NoSpam.invalid> wrote: – Hide quoted text — Show quoted text ->I guess you can add me to the list. I just know that I hurt, and it seems >to be from the top of my head to the tips of my toes, my joints, my muscles >and everything in between. Does that make any sense? >Sherry

Response:

and adds a head rush from hanging your head down? "Mary T. Rawle" <stin…@earthlink.net> wrote in message news:D5W1a.9741$tO2.942945@newsread1.prod.itd.earthlink.net… – Hide quoted text — Show quoted text -> "Sherry" <hurst…@NoSpam.invalid> wrote in message > news:sER1a.501$5H6.42270880@newssvr21.news.prodigy.com… > > Or to brush your hair, use a blow dryer, curling iron, or do anything that > > resembles putting on your face and looking like you took some time to look > > "nice"! > Ha! I didn’t even think of those things… I am such a slob..gave up > primping and preening years ago. BTW I blow dry my hair with my head > *down.* It adds fullness to the hair, plus you don’t have to hold your arms > up. > mary > > Sherry > > "Mary T. Rawle" <stin…@earthlink.net> wrote in message > > news:9oQ1a.9259$1q2.912970@newsread2.prod.itd.earthlink.net… > > > Me too. Well, myalgia. I am diagnosed with "arthralgias and myalgias." > > > I have trouble most noticably holding my arms up, such as holding my > > > binoculars to watch the birds, or to play guitar or wash the dishes. > > > Mary > > > "Grace Casselman" <gr…@casselman.net> wrote in message > > > news:3E4709EC.4A1B033F@casselman.net… > > > > So, apparently my biggest Lupus issue is muscle

inflammation/weakness, – Hide quoted text — Show quoted text -> > > > also called Myositis. > > > > Who else out there has this? > > > > Here are a couple good URLs on it: > > > > http://www.orthop.washington.edu/arthritis/types/myositis/02 > > > > http://www.myositis.org/ > > > > Grace.

Response:

Let us know how the appt goes. Suzie "Lissa Kearney" <Sweat…@yahoo.com> wrote in message

news:aucg4vkourt6svmap3h8rtioi4pto0676t@4ax.com… – Hide quoted text — Show quoted text -> That describes me as well. And as someone else said – it is roving. > It is constant in my knees and up my thighs. Sometimes as weird as > it sounds, my buttocks ache. Sometime my upper arms, hip, shoulders, > feet. I have problems sleeping because I ache worse lying in bed. > Now this darn eye thing. I did call and the eye doctor wanted to see > me tomorrow morning. (He was in surgery all day today, but I at least > got a call back from his office!) > On Mon, 10 Feb 2003 04:07:43 GMT, "Sherry" <hurst…@NoSpam.invalid> > wrote: > >I guess you can add me to the list. I just know that I hurt, and it seems > >to be from the top of my head to the tips of my toes, my joints, my muscles > >and everything in between. Does that make any sense? > >Sherry

Response:

Mary T. Rawle wrote: > Me too. Well, myalgia. I am diagnosed with "arthralgias and myalgias." > I have trouble most noticably holding my arms up, such as holding my > binoculars to watch the birds, or to play guitar or wash the dishes. > Mary

<snip> I was dxed with the same "arthralgias, neuralgias and myalgias." All I can say is ouch! -Sharon — ~Joy~ If the sight of the blue skies fills you with joy, if the simple things of nature have a messsage that you understand, rejoice, because your soul is alive. -Eleonora Duse

Response:

Mary T. Rawle wrote: > "Sherry" <hurst…@NoSpam.invalid> wrote in message > news:sER1a.501$5H6.42270880@newssvr21.news.prodigy.com… >>Or to brush your hair, use a blow dryer, curling iron, or do anything that >>resembles putting on your face and looking like you took some time to look >>"nice"! > Ha! I didn’t even think of those things… I am such a slob..gave up > primping and preening years ago. BTW I blow dry my hair with my head > *down.* It adds fullness to the hair, plus you don’t have to hold your arms > up. > mary

<snip> What’s this ‘blow dry’ you speak of? I just wash, comb with fingers, tye back and go! Not much to look at, but it works for me! -Sharon — ~Joy~ If the sight of the blue skies fills you with joy, if the simple things of nature have a messsage that you understand, rejoice, because your soul is alive. -Eleonora Duse

Response:

J <StrangeAdva…@example.com> wrote in message

news:3E480364.874566FB@execulink.com… > > You have something to say about connective tissue disorder .. or myositis > > ..? > > Didn’t think so .. > > You have nothing but personal OPINIONS .. and on a medical newsgroup those > > don’t account for diddley-squat .. let alone the fact it is considered to be > > BAD MANNERS .. but don’t let that stop ya .. > No Flaming: i.e., Please do not harm the group or others with harsh

criticism. So I suppose one could .. discern .. you have just broken a rule ..? > or is a rant, than please try to remember > to indicate such on the subject line

Another rule broken .. So .. GET WITH THE PROGRAM !! Who loves ya. Tom — Jesus Was A Vegetarian! http://jesuswasavegetarian.7h.com Man Is A Herbivore! http://pages.ivillage.com/ironjustice/manisaherbivore

Response:

ironjustice wrote:

<snipped>What Content is Appropriate for ASL? ASL’s purpose stated above should imply content. However, the following are the basic rules of Netiquette that members are asked to follow. No Flaming: i.e., Please do not harm the group or others with harsh criticism. No Peddling: Groups that support persons with chronic illnesses are often the target of "snake oil" salespersons. Though the members of the group do not mind suggestions for alternative treatments or supplements, posting advertisements for products of any kind is generally frowned upon. Guide to Live by on Usenet including This Group: If you earn a commission in money or in kind by advocating an item, do so elsewhere. Use appropriate Notations: Off-topic posts are welcome on ASL with the exceptions of advocating religious groups, political ideals and similar "flame-prone" topics. If a post is Off-Topic, that is not directly related to SLE, please indicate this by putting the proper notation in the Subject line. Examples: OT: My Dog is Sick. or OT: I’m Getting Married. This is not a hard and fast rule as threads often degenerate into humorous parleys or other OT discussions. If a post is OT but contains profanity or is a rant, than please try to remember to indicate such on the subject line. Again, this is not carved in stone. The group is dynamic and friendly and generally takes little issue, if any, with OT or Rant posts. These are, after all, parts of our lives and Lupus affects our lives in every way. Text Only: No pictures, video clips, music, etc. Try not to have a file attached to your signature and do not use "stationery". Stationery may look pretty but many of us just get dozens of little pictures in our attachments directory or other artifacts of little or no use. Try not to post in HTML, even if you also post in plain text (you may need to alter your news-posting software’s settings.) If you would like to share pictures or other large documents with others in the group, please post only a website address where the file can be viewed or ask individuals to contact you for the download in private email. To Top Who can be a part of this group? You can! This is Usenet – so anyone who wants to be here, can be here. Our members consist of lupus patients (both SLE and DLE) as well as patients still in the throes of what you could call "diagnostic limbo". Other members of ASL include support persons who have family members, friends or co-workers that have some form of the disease. Still other members are folks who have similar diseases but not precisely the same as SLE or DLE and yet find that their symptoms are sufficiently similar to get information from this group. Physicians or Researchers are encouraged to participate in the group as long as they are not advocating their practice or a specific product. Advocating (for profit) in general is considered bad netiquette where support newsgroups are concerned. ASL is no different in this respect. As this is an open (unmoderated) Usenet group, people will sometimes post material which you may find abusive, upsetting, indecent, offensive, etc. Please ignore it. Don’t reply to such postings as it only encourages those who post them and may subject you to personal email that is equally offensive. These posts might be cross-posted, that is posted to several unrelated groups, either by accident or deliberately http://www.telus.net/aup.html Acceptable Use Policy Introduction TELUS Consumer and Small Business Internet Services (for the purposes of this document referred to as "TELUS") is committed to being the best possible network citizen. To assist us in protecting the usefulness and enjoyment of the Internet for our members and for other users, we require that you comply with the terms of this document, which outlines our policies on acceptable use of our services. When using your TELUS Internet access service or any chat rooms, message boards, news groups, software libraries, personal web pages or any other message or communication services that may be available to you on or through TELUS Internet systems (collectively, the "Communication Services"), you are prohibited from engaging in certain activities which include, but are not limited to, those described below. Such prohibited activities may, at the sole discretion of TELUS, be grounds for termination of any Communication Services (including your TELUS Internet access service), for the application of additional service charges, or for the involvement of law enforcement agencies. The terms of this Policy may change at any time and without prior warning. 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Response:

ironjustice wrote:

<snipped> ASL’s purpose stated above should imply content. However, the following are the basic rules of Netiquette that members are asked to follow. No Flaming: i.e., Please do not harm the group or others with harsh criticism. No Peddling: Groups that support persons with chronic illnesses are often the target of "snake oil" salespersons. Though the members of the group do not mind suggestions for alternative treatments or supplements, posting advertisements for products of any kind is generally frowned upon. Guide to Live by on Usenet including This Group: If you earn a commission in money or in kind by advocating an item, do so elsewhere. Use appropriate Notations: Off-topic posts are welcome on ASL with the exceptions of advocating religious groups, political ideals and similar "flame-prone" topics. If a post is Off-Topic, that is not directly related to SLE, please indicate this by putting the proper notation in the Subject line. Examples: OT: My Dog is Sick. or OT: I’m Getting Married. This is not a hard and fast rule as threads often degenerate into humorous parleys or other OT discussions. If a post is OT but contains profanity or is a rant, than please try to remember to indicate such on the subject line. Again, this is not carved in stone. The group is dynamic and friendly and generally takes little issue, if any, with OT or Rant posts. These are, after all, parts of our lives and Lupus affects our lives in every way. Text Only: No pictures, video clips, music, etc. Try not to have a file attached to your signature and do not use "stationery". Stationery may look pretty but many of us just get dozens of little pictures in our attachments directory or other artifacts of little or no use. Try not to post in HTML, even if you also post in plain text (you may need to alter your news-posting software’s settings.) If you would like to share pictures or other large documents with others in the group, please post only a website address where the file can be viewed or ask individuals to contact you for the download in private email. To Top Who can be a part of this group? You can! This is Usenet – so anyone who wants to be here, can be here. Our members consist of lupus patients (both SLE and DLE) as well as patients still in the throes of what you could call "diagnostic limbo". Other members of ASL include support persons who have family members, friends or co-workers that have some form of the disease. Still other members are folks who have similar diseases but not precisely the same as SLE or DLE and yet find that their symptoms are sufficiently similar to get information from this group. Physicians or Researchers are encouraged to participate in the group as long as they are not advocating their practice or a specific product. Advocating (for profit) in general is considered bad netiquette where support newsgroups are concerned. ASL is no different in this respect. As this is an open (unmoderated) Usenet group, people will sometimes post material which you may find abusive, upsetting, indecent, offensive, etc. Please ignore it. Don’t reply to such postings as it only encourages those who post them and may subject you to personal email that is equally offensive. These posts might be cross-posted, that is posted to several unrelated groups, either by accident or deliberately. For more on this topic, KC highly recommendsDianne’s Patented Magic Flame

Response:

Grace Casselman <gr…@casselman.net> wrote in message

news:3E4709EC.4A1B033F@casselman.net… > So, apparently my biggest Lupus issue is muscle inflammation/weakness, > also called Myositis. > Who else out there has this? > Here are a couple good URLs on it: > http://www.orthop.washington.edu/arthritis/types/myositis/02 > http://www.myositis.org/ > Grace.

Iron loading has been SHOWN in those with muscle pain. Increased iron load leads to higher than normal levels of rust / oxidation / oxidative stress. <<snip>> Myoglobin heme iron could potentially serve as a Fenton reagent for the intracellular generation of hydroxyl radicals, which are responsible for the oxidation of the porphyrinogens <<snip>> Am J Pathol 1998 Sep;153(3):703-8 Porphyrin loading of lipofuscin granules in inflamed striated muscle. Kiefer CR, McKenney JB, Trainor JF, Lambrecht RW, Bonkovsky HL, Lifshitz LM, Valeri CR, Snyder LM Department of Hospital Laboratories/Clinical Pathology, University of Massachusetts Medical Center, Worcester, USA. charles.kie…@banyan.ummed.edu To further the understanding of oxidative effects on inflammation injury to muscle fiber structure, fluorescent imaging analysis of human striated muscle tissues from a variety of inflammatory or postinflammatory etiologies was undertaken in a search for accumulated coproporphyrin, a red autofluorescent byproduct of heme biosynthesis that would theoretically be formed under oxidative insult. Using a differential excitation method of in situ analysis, porphyrin autofluorescence was detected in intact fibers within the context of the yellow autofluorescent subsarcolemmal lipofuscin granules. Relative measurements of porphyrin concentration in the granules from different patients indicated that the acute/subacute inflammatory specimens grouped significantly higher than the more chronic inflammatory and nonpathological specimens. Myoglobin was also found to be associated with the granules. Myoglobin heme iron could potentially serve as a Fenton reagent for the intracellular generation of hydroxyl radicals, which are responsible for the oxidation of the porphyrinogens. High-performance liquid chromatography analysis of extracted dense particles revealed coproporphyrin as the sole porphyrin present. The observation of coproporphyrin within lipofuscin granules, previously unreported, suggests that lipofuscin accumulation in striated muscle may begin under conditions of acute oxidative stress, as marked by the oxidation of extramitochondrial porphyrinogens that are immediately incorporated into the granules. PMID: 9736020, UI: 98405427 ————————————————————————— – —- <<snip>> The results disclosed that there was a higher deposition of iron in rheumatoid muscle as compared with normals. <<snip>> Scand J Rheumatol 1976;5(4):205-8 A comparison of the content of iron in normal and rheumatoid striated muscle. Goldie IF, Bjonness T, Tiselius P, Plantin LO, Sato T An investigation has been carried out on the presence of iron in striated muscle from normal individuals and from patients with rheumatoid disease. The methods used for the estimation of iron required a neutron activation analysis of total iron and extraction of hemoglobin in cyanide buffer. The results disclosed that there was a higher deposition of iron in rheumatoid muscle as compared with normals. Iron has a destructive effect on lysosomes and mast cells, the effect of which is an inflammatory reaction which may in part cause "metabolic myopathy" in rheumatoid disease. It is tentatively suggested that this "metabolic myopathy" may cause muscular pain and weakness in rheumatoid disease. PMID: 1006210, UI: 77080814 _________________________________________________________________ Who loves ya. Tom — Jesus Was A Vegetarian! http://jesuswasavegetarian.7h.com Man Is A Herbivore! http://pages.ivillage.com/ironjustice/manisaherbivore

Response:

Go away Tom, Lupus and associated disorders are way too complex for you. and you could kill someone with your ideas. And the Canadians here could sue you. J – Hide quoted text — Show quoted text -ironjustice wrote:

Response:

Or to brush your hair, use a blow dryer, curling iron, or do anything that resembles putting on your face and looking like you took some time to look "nice"! Sherry "Mary T. Rawle" <stin…@earthlink.net> wrote in message news:9oQ1a.9259$1q2.912970@newsread2.prod.itd.earthlink.net… – Hide quoted text — Show quoted text -> Me too. Well, myalgia. I am diagnosed with "arthralgias and myalgias." > I have trouble most noticably holding my arms up, such as holding my > binoculars to watch the birds, or to play guitar or wash the dishes. > Mary > "Grace Casselman" <gr…@casselman.net> wrote in message > news:3E4709EC.4A1B033F@casselman.net… > > So, apparently my biggest Lupus issue is muscle inflammation/weakness, > > also called Myositis. > > Who else out there has this? > > Here are a couple good URLs on it: > > http://www.orthop.washington.edu/arthritis/types/myositis/02 > > http://www.myositis.org/ > > Grace.

Response:

J <StrangeAdva…@example.com> wrote in message

news:3E47E4BD.EADE2259@execulink.com… > Go away Tom, > Lupus and associated disorders are way too complex for you. > and you could kill someone with your ideas. > And the Canadians here could sue you.

You have something to say about connective tissue disorder .. or myositis ..? Didn’t think so .. You have nothing but personal OPINIONS .. and on a medical newsgroup those don’t account for diddley-squat .. let alone the fact it is considered to be BAD MANNERS .. but don’t let that stop ya .. How come I get the feeling diddley-squat is about the extent of your .. contribution .. ? Could be because you are FULL .. of .. it .. <<snip>> . These data demonstrate that systemic lupus erythematosus in MRL/MPJ-lpr/lpr mice is altered by dietary iron. <<snip>> J Nutr 1995 Mar;125(3):474-84 Iron status alters murine systemic lupus erythematosus. Leiter LM, Reuhl KR, Racis SP Jr, Sherman AR Department of Nutritional Sciences, Rutgers, State University of New Jersey, New Brunswick 08903. The effect of Fe status on murine systemic lupus erythematosus was investigated. Weanling female MRL/MPJ-lpr/lpr mice (systemic lupus erythematosus strain) were fed diets with the following levels (mg Fe/kg diet): 3 (severely deficient), 10 (moderately deficient), 35 (control) and 250 (supplemented). A fifth group was pair fed the control diet in the amounts consumed by the severely deficient group. C3H/Hej mice fed the same diets were used as non-lupus controls. Anemia was more severe in severely deficient mice than in all other MRL groups and C3H severely deficient mice. Incidence of skin lesions was highest in MRL severely and moderately deficient mice compared with pair-fed, control and supplemented mice. By 22 wk of age, mortality was higher in supplemented and severely deficient mice than in moderately deficient, pair-fed and control MRL mice. Anti-dsDNA activity in serum was not altered by Fe. In a second experiment, kidney function was examined in mice fed severely deficient, control, supplemented and pair-fed diets. Urine protein concentration was highest in supplemented mice at 14 wk of age. Serum urea nitrogen was significantly higher in MRL severely deficient mice than in pair-fed and control mice at 18 wk of age. Glomerular filtration rate, measured by creatinine clearance, was significantly lower in MRL severely deficient mice than in pair-fed and Fe supplemented mice at 16 wk of age and pair-fed and control mice at 18 wk of age. Renal histopathology was more severe in Fe supplemented mice than in pair-fed and control mice, and more severe in severely deficient and pair-fed mice than in control mice. Fluorescent staining of kidneys with anti-Ig G and anti-C3 fluorescein-conjugated antibodies was most intense in severely deficient mice, and the concentration of circulating immune complexes in serum was significantly higher in severely deficient mice than in all other groups. These data demonstrate that systemic lupus erythematosus in MRL/MPJ-lpr/lpr mice is altered by dietary iron. PMID: 7876923, UI: 95182200 Who loves ya. Tom — Jesus Was A Vegetarian! http://jesuswasavegetarian.7h.com Man Is A Herbivore! http://pages.ivillage.com/ironjustice/manisaherbivore

Response:

- Hide quoted text — Show quoted text -ironjustice wrote: > J <StrangeAdva…@example.com> wrote in message > news:3E47E4BD.EADE2259@execulink.com… > > Go away Tom, > > Lupus and associated disorders are way too complex for you. > > and you could kill someone with your ideas. > > And the Canadians here could sue you. > You have something to say about connective tissue disorder .. or myositis > ..? > Didn’t think so .. > You have nothing but personal OPINIONS .. and on a medical newsgroup those > don’t account for diddley-squat .. let alone the fact it is considered to be > BAD MANNERS .. but don’t let that stop ya .. > How come I get the feeling diddley-squat is about the extent of your .. > contribution .. ? > Could be because you are FULL .. of .. it ..

ASL’s purpose stated above should imply content. However, the following are the basic rules of Netiquette that members are asked to follow. No Flaming: i.e., Please do not harm the group or others with harsh criticism. No Peddling: Groups that support persons with chronic illnesses are often the target of "snake oil" salespersons. Though the members of the group do not mind suggestions for alternative treatments or supplements, posting advertisements for products of any kind is generally frowned upon. Guide to Live by on Usenet including This Group: If you earn a commission in money or in kind by advocating an item, do so elsewhere. Use appropriate Notations: Off-topic posts are welcome on ASL with the exceptions of advocating religious groups, political ideals and similar "flame-prone" topics. If a post is Off-Topic, that is not directly related to SLE, please indicate this by putting the proper notation in the Subject line. Examples: OT: My Dog is Sick. or OT: I’m Getting Married. This is not a hard and fast rule as threads often degenerate into humorous parleys or other OT discussions. If a post is OT but contains profanity or is a rant, than please try to remember to indicate such on the subject line. Again, this is not carved in stone. The group is dynamic and friendly and generally takes little issue, if any, with OT or Rant posts. These are, after all, parts of our lives and Lupus affects our lives in every way. Text Only: No pictures, video clips, music, etc. Try not to have a file attached to your signature and do not use "stationery". Stationery may look pretty but many of us just get dozens of little pictures in our attachments directory or other artifacts of little or no use. Try not to post in HTML, even if you also post in plain text (you may need to alter your news-posting software’s settings.) If you would like to share pictures or other large documents with others in the group, please post only a website address where the file can be viewed or ask individuals to contact you for the download in private email. To Top Who can be a part of this group? You can! This is Usenet – so anyone who wants to be here, can be here. Our members consist of lupus patients (both SLE and DLE) as well as patients still in the throes of what you could call "diagnostic limbo". Other members of ASL include support persons who have family members, friends or co-workers that have some form of the disease. Still other members are folks who have similar diseases but not precisely the same as SLE or DLE and yet find that their symptoms are sufficiently similar to get information from this group. Physicians or Researchers are encouraged to participate in the group as long as they are not advocating their practice or a specific product. Advocating (for profit) in general is considered bad netiquette where support newsgroups are concerned. ASL is no different in this respect. As this is an open (unmoderated) Usenet group, people will sometimes post material which you may find abusive, upsetting, indecent, offensive, etc. Please ignore it. Don’t reply to such postings as it only encourages those who post them and may subject you to personal email that is equally offensive. These posts might be cross-posted, that is posted to several unrelated groups, either by accident or deliberately. For more on this topic, KC highly recommendsDianne’s Patented Magic Flame

Response:

Me too. Well, myalgia. I am diagnosed with "arthralgias and myalgias." I have trouble most noticably holding my arms up, such as holding my binoculars to watch the birds, or to play guitar or wash the dishes. Mary "Grace Casselman" <gr…@casselman.net> wrote in message

news:3E4709EC.4A1B033F@casselman.net… – Hide quoted text — Show quoted text -> So, apparently my biggest Lupus issue is muscle inflammation/weakness, > also called Myositis. > Who else out there has this? > Here are a couple good URLs on it: > http://www.orthop.washington.edu/arthritis/types/myositis/02 > http://www.myositis.org/ > Grace.

Response:

Hi Wes, I sure wish they’d get a handle on what’s happening with you and/or treatment for the symptoms http://www.orthop.washington.edu/arthritis/types/myositis/04 mentioned prednisone and/or MTX, have they tried MTX? (or is there a reason they can’t) J – Hide quoted text — Show quoted text -Wesley wrote: > That’s me too! I can barely walk. Every time I go to rheumy, I > complain of pain. He examines my joints, moves arms and legs around, > tests for weakness. I just figured out that most of pain is not at > the joints. Take fingers for instance (please). The pain is BETWEEN > the joints on the palm side of each hand, and is transferred to the > joints with movement. Sort of like a referred pain. Squeeze above > wrists, over calves or achilles tendons, and It hurts like crazy. Is > this possibly MCTD?

Response:

Hi Beverly, That’s me too! I can barely walk. Every time I go to rheumy, I complain of pain. He examines my joints, moves arms and legs around, tests for weakness. I just figured out that most of pain is not at the joints. Take fingers for instance (please). The pain is BETWEEN the joints on the palm side of each hand, and is transferred to the joints with movement. Sort of like a referred pain. Squeeze above wrists, over calves or achilles tendons, and It hurts like crazy. Is this possibly MCTD? Wes – Hide quoted text — Show quoted text -"Beverley" <beverly.brow…@verizon.net> wrote in message <news:_RG1a.13914$9y2.6476@nwrddc01.gnilink.net>… > As in I can barely get down the steps in the morning? Just like I can barely > get up them at night? > Or when I sit down and put my feet up and then try to stand back up and > walk? > I’ve figured out I just can’t stop doing what I’m doing or I can’t do it > again for a while. > Oh, and then the Charlie horses start, sometimes at night sometimes during > the day. Then it feels as if I’ve pulled that muscle. So painful. > Bev > "Grace Casselman" <gr…@casselman.net> wrote in message > news:3E473136.F8EF414C@casselman.net… > > Yes. It seems that muscle pain is generally referred to as myalgia… > versus > > the myocitis, which is muscle weakness/inflammation… although I think > one can > > have both… > > I don’t hurt as much as I used to… but it’s definitely worse in the > morning. > > Grace. > > Sherry wrote: > > > I guess you can add me to the list. I just know that I hurt, and it > seems > > > to be from the top of my head to the tips of my toes, my joints, my > muscles > > > and everything in between. Does that make any sense?

Response:

As in I can barely get down the steps in the morning? Just like I can barely get up them at night? Or when I sit down and put my feet up and then try to stand back up and walk? I’ve figured out I just can’t stop doing what I’m doing or I can’t do it again for a while. Oh, and then the Charlie horses start, sometimes at night sometimes during the day. Then it feels as if I’ve pulled that muscle. So painful. Bev "Grace Casselman" <gr…@casselman.net> wrote in message

news:3E473136.F8EF414C@casselman.net… – Hide quoted text — Show quoted text -> Yes. It seems that muscle pain is generally referred to as myalgia… versus > the myocitis, which is muscle weakness/inflammation… although I think one can > have both… > I don’t hurt as much as I used to… but it’s definitely worse in the morning. > Grace. > Sherry wrote: > > I guess you can add me to the list. I just know that I hurt, and it seems > > to be from the top of my head to the tips of my toes, my joints, my muscles > > and everything in between. Does that make any sense?

Response:

Yep, that is part of the explanation. "Beverley" <beverly.brow…@verizon.net> wrote in message

news:_RG1a.13914$9y2.6476@nwrddc01.gnilink.net… – Hide quoted text — Show quoted text -> As in I can barely get down the steps in the morning? Just like I can barely > get up them at night? > Or when I sit down and put my feet up and then try to stand back up and > walk? > I’ve figured out I just can’t stop doing what I’m doing or I can’t do it > again for a while. > Oh, and then the Charlie horses start, sometimes at night sometimes during > the day. Then it feels as if I’ve pulled that muscle. So painful. > Bev > "Grace Casselman" <gr…@casselman.net> wrote in message > news:3E473136.F8EF414C@casselman.net… > > Yes. It seems that muscle pain is generally referred to as myalgia… > versus > > the myocitis, which is muscle weakness/inflammation… although I think > one can > > have both… > > I don’t hurt as much as I used to… but it’s definitely worse in the > morning. > > Grace. > > Sherry wrote: > > > I guess you can add me to the list. I just know that I hurt, and it > seems > > > to be from the top of my head to the tips of my toes, my joints, my > muscles > > > and everything in between. Does that make any sense?

Response:

So, apparently my biggest Lupus issue is muscle inflammation/weakness, also called Myositis. Who else out there has this? Here are a couple good URLs on it: http://www.orthop.washington.edu/arthritis/types/myositis/02 http://www.myositis.org/ Grace.

Response:

I guess you can add me to the list. I just know that I hurt, and it seems to be from the top of my head to the tips of my toes, my joints, my muscles and everything in between. Does that make any sense? Sherry "Grace Casselman" <gr…@casselman.net> wrote in message

Response:

Yes. It seems that muscle pain is generally referred to as myalgia… versus the myocitis, which is muscle weakness/inflammation… although I think one can have both… I don’t hurt as much as I used to… but it’s definitely worse in the morning. Grace. – Hide quoted text — Show quoted text -Sherry wrote: > I guess you can add me to the list. I just know that I hurt, and it seems > to be from the top of my head to the tips of my toes, my joints, my muscles > and everything in between. Does that make any sense?

Response:

Grace Casselman wrote: > Yes. It seems that muscle pain is generally referred to as myalgia… versus > the myocitis, which is muscle weakness/inflammation… although I think one can > have both… > I don’t hurt as much as I used to… but it’s definitely worse in the morning. > Grace.

<snip> Oh man, hubby can’t talk to me in the morning unless I woke up first and had my moment. The mornings s**k! -Sharon (hurting already- snow’s on the way… Again.) — ~Joy~ If the sight of the blue skies fills you with joy, if the simple things of nature have a messsage that you understand, rejoice, because your soul is alive. -Eleonora Duse

Response:

Posted in Rheumatoid Arthritis Lupus | No Comments » |

Penicillamine for skin thickening

Question:

Eleanor – I don’t know anything about the results your doc found on the echo. I have had anemia, though! My doc concluded mine was probably a mixture of iron deficient anemia and "anemia of chronic disease." http://health.yahoo.com/health/encyclopedia/000565/0.html A little bit of both just for the heck of it! I went on a low dose (5mg) course of Prednisone for about a year, but my doc also put me on iron supplementation, which I’m still on. I don’t know if the Pred. really helped – maybe it was just getting out of the flare I was in that settled things down. Anemia is a nasty problem. I was really flattened by it for months, and it seemed to get easily missed by all my docs. It messed up PFTs enough to have a Pulmonary doc thinking I might have pulmonary hypertension (which I don’t!) I was short-of-breath for quite awhile from it, too, which of course is immediately interpreted as heart and/or lung problems. Hope this helps. Amie – Hide quoted text — Show quoted text -elebourd wrote: > Thanks Amelia and Dave for your comments. I was just diagnosed in > October though I’ve been having symptoms for about 2 years, complicated > by the fact that I also have lupus (since 1961). My doctor wants to > start me on 250 mg daily for a month and then 500 mg per day for 3 > months. I guess whether he raises the dose again will depend on my > response. He also decided to try D-Pen to improve my anemia which he > said won’t respond to iron supplementation. I haven’t been able to find > anything in the scleroderma literature about anemia in relation to > scleroderma or taking D-Pen to improve it. I’ve been on 25 mg per week > of injected methotrexate for about 2 years and symptoms have been > progressing and escalating while on it, so clearly methotrexate doesn’t > prevent anything, though perhaps it does reduce severity? Don’t know. > One last question. I had my first baseline echo in Dec and it showed > calcification around the mitral and aortic valves. My doc said that was > "characteristic" and was no big deal at this point. I’m not aware of > anything happening there myself. Is this very common. Thanks again for > your input! > Eleanor

Response:

Amie – My doc said iron supplementation wouldn’t do any good because it would just get excreted. Something to do with the bone marrow not metabolizing the iron. He said I’m also not properly handling iron from food sources for the same reason. I’m interested that it messed up your PFT. My recent one in Dec was fine. Unfortunately, a whole mess of drugs don’t seem to be doing anything to hamper my advancing disease. It just hums along doing its thing even though I’ve been on prednisone (7.5 mg), Plaquenil, and naproxen (a non-steroidal antiinflammatory) for years, and 25 mg per week of methotrexate for the last 2 years, all for my lupus. I’ve seen suggestion in the medical literature that prednisone might even make scleroderma worse, but I guess because of the lupus my doc want me to stay on it. My rheumatologist particularly wants me to stay on the methotrexate. He said people on MTX survive longer than those who are not. So far, I haven’t been able to find anything in the literature suggesting that. While I’m here I want to say I was really glad to find this newsgroup. I belong to a mail list for people with lupus which is helpful for that disease, but none of the members have scleroderma symptoms of course, and they’ve never heard of penicillamine. I’m kind of anxious about the unpredictability of this disease and it’s nice to have a place where I can ask questions or at least have people who will understand what’s going on. So, thanks for being there Eleanor

Response:

Thanks Amelia and Dave for your comments. I was just diagnosed in October though I’ve been having symptoms for about 2 years, complicated by the fact that I also have lupus (since 1961). My doctor wants to start me on 250 mg daily for a month and then 500 mg per day for 3 months. I guess whether he raises the dose again will depend on my response. He also decided to try D-Pen to improve my anemia which he said won’t respond to iron supplementation. I haven’t been able to find anything in the scleroderma literature about anemia in relation to scleroderma or taking D-Pen to improve it. I’ve been on 25 mg per week of injected methotrexate for about 2 years and symptoms have been progressing and escalating while on it, so clearly methotrexate doesn’t prevent anything, though perhaps it does reduce severity? Don’t know. One last question. I had my first baseline echo in Dec and it showed calcification around the mitral and aortic valves. My doc said that was "characteristic" and was no big deal at this point. I’m not aware of anything happening there myself. Is this very common. Thanks again for your input! Eleanor

Response:

I have skin thickening and calcium stone/fluid deposits in my fingers. My rheumatologist wants me to start taking penicillamine for this. Has anyone had any improvement taking this drug? The side-effects don’t sound very nice, what is it like to take? Thanks for any input. Eleanor

Response:

This is from the large study done a few years ago to test low-dose D-pen vs. high-dose Dpen: CONCLUSION: The course of the skin score and the frequencies of SRC and mortality in the high-dose D-Pen group were not different from those in the low-dose D-Pen group. Eighty percent of the adverse event-related withdrawals occurred in the high-dose D-Pen patients. Although this study cannot answer the question of whether low-dose D-Pen is effective, >>>it does suggest that there is no advantage to using D-Pen in doses higher than 125 every other day.<<< If your doc wants to work you up to a 1000 or 1200mg dose, ask why and see if s/he has read about this study – High-dose versus low-dose D-penicillamine in early diffuse systemic sclerosis: analysis of a two-year, double-blind, randomized, controlled clinical trial. Arthritis Rheum 1999 Jun;42(6):1194-203 (ISSN: 0004-3591) I took high-dose d-pen for about 4 years. I was lucky and tolerated it well. I also took methotrexate and colchicine at the same time. I stopped all these drugs after having further skin and other involvement while on them. While they didn’t work for me, I agree with Dave that these drugs may be useful for some people, so it’s worth considering and talking over the pros and cons with your doc. Amie – Hide quoted text — Show quoted text -elebourd wrote: > I have skin thickening and calcium stone/fluid deposits in my fingers. > My rheumatologist wants me to start taking penicillamine for this. Has > anyone had any improvement taking this drug? The side-effects don’t > sound very nice, what is it like to take? Thanks for any input. > Eleanor

Response:

That’s definitely ACD – bone marrow isn’t handling iron right. Great treatment for that – "treat the underlying disease." If we could do that, we wouldn’t have the anemia, now would we??? I don’t know where you read about Pred. making scleroderma worse. Do you have the info on the study(ies)? Methotrexate hasn’t been proven to be effective, but many people still try it. http://makeashorterlink.com/?N31912623 I quit when it clearly wasn’t working for me in the middle of a flare. Glad you found us. You may also want to check on the web for "Mixed Connective Tissue Disease," which is scleroderma in addition to Lupus or rheumatoid arthritis, etc. As complicated as scleroderma and Lupus are individually, it’s got to be really challenging to have both. Welcome and ask away – there’s a wide variety of experience here. Amie – Hide quoted text — Show quoted text -elebourd wrote: > Amie – > My doc said iron supplementation wouldn’t do any good because it would > just get excreted. Something to do with the bone marrow not metabolizing > the iron. He said I’m also not properly handling iron from food sources > for the same reason. I’m interested that it messed up your PFT. My > recent one in Dec was fine. Unfortunately, a whole mess of drugs don’t > seem to be doing anything to hamper my advancing disease. It just hums > along doing its thing even though I’ve been on prednisone (7.5 mg), > Plaquenil, and naproxen (a non-steroidal antiinflammatory) for years, > and 25 mg per week of methotrexate for the last 2 years, all for my > lupus. I’ve seen suggestion in the medical literature that prednisone > might even make scleroderma worse, but I guess because of the lupus my > doc want me to stay on it. My rheumatologist particularly wants me to > stay on the methotrexate. He said people on MTX survive longer than > those who are not. So far, I haven’t been able to find anything in the > literature suggesting that. > While I’m here I want to say I was really glad to find this newsgroup. > I belong to a mail list for people with lupus which is helpful for that > disease, but none of the members have scleroderma symptoms of course, > and they’ve never heard of penicillamine. I’m kind of anxious about the > unpredictability of this disease and it’s nice to have a place where I > can ask questions or at least have people who will understand what’s > going on. So, thanks for being there > Eleanor

Response:

elebourd wrote: > I have skin thickening and calcium stone/fluid deposits in my fingers. > My rheumatologist wants me to start taking penicillamine for this. Has > anyone had any improvement taking this drug? The side-effects don’t > sound very nice, what is it like to take? Thanks for any input.

Eleanor, I’ve been taking penicillamine for around 4 years. I have had some improvement – whether or not this is because of the drug or not is debatable. But I’m going to continue to take it. I haven’t had any side effects, other than slight stomach upset (I wait 2 hours after a meal to take it, and wait one hour after taking it to eat – which seriously messes up my snack time! But tests have shown it doesn’t help all folks with SD – but it does seem to help some of us. good luck! dave

Response:

> I don’t know where you read about Pred. making scleroderma worse. Do > you have the info on the study(ies)?

Unfortunately, it must have been in one of the things I saw somewhere on the Net that I didn’t keep, since I can’t find it. Perhaps what it was referring to, without more thorough elaboration, was the suggestion that high-dose pred runs the risk of greater renal damage or involvement, which I have seen stated in a number of places. But no surprise there, that’s probably true if high-dose pred is taken for anything. Sorry to be misleading… Eleanor

Response:

Posted in Rheumatoid Arthritis Lupus | No Comments » |

A bit confused about Still's disease

Question:

J wrote:

<snip> > Hi Sharon, > Still’s disease is one type of juvenile rheumatoid arthritis (JRA). > Hugs > J

Yeah, I read that it’s still unknown whether JRA and Still’s is the same thing, meaning that JRA progresses into Still’s in adults, or if it’s they’re different from one another. -Sharon — Visit my webpage: http://www.qc.edu/~sperlof1/stills/webpage.html ~Integrity~ Integrity is one of the several paths. It distinguishes itself from the others because it is the right path… and the only one upon which you will never get lost. -M.H. McKee

Response:

Hi Sharon, I read some of the info on the urls others posted for you. I can see why you might be confused. Some things fit with the symptoms you are having, others don’t. When do you see the rheumy? Do you have an appt yet? I am sure that he/she will be able to help figure out what is going on. It is the waiting that is so hard. BJ-Sk. Canada "Sharon Perloff" <noway…@hotmail.com> wrote in message

news:auls4i$7sthr$3@ID-163463.news.dfncis.de… – Hide quoted text — Show quoted text -> I’ve been trying to learn a bit about Still’s over the past two days, > and so far I’m left confused. > I’ve read conflicting info on whether or not it’s autoimmune, or if it’s > actually arthritis, etc. Not sure exactly what it is, but I do know the > treatments are the same, so I guess it’s not that important. I’m just > wondering if anyone knows, or can find maybe some definitive info on this. > -Sharon > — > ~Integrity~ > Integrity is one of the several paths. > It distinguishes itself from the others > because it is the right path… > and the only one upon which you will never > get lost. > -M.H. McKee

Response:

BJ wrote: > Hi Sharon, > I read some of the info on the urls others posted for you. I can see why you > might be confused. Some things fit with the symptoms you are having, others > don’t. When do you see the rheumy? Do you have an appt yet? I am sure that > he/she will be able to help figure out what is going on. It is the waiting > that is so hard. > BJ-Sk. Canada

<snip> Hi BJ, I made the appt yesterday for two weeks from now. They would’ve had me in within a week, but I wanted a morning appt so hubby can go with me and then get to work afterwards. It’s very confusing, but hopefully it will be cleared up after the RD visit. Thanks for your sympathy. I thought it was just me being thick about what these pages said on Still’s. -Sharon — Visit my webpage: http://www.qc.edu/~sperlof1/stills/webpage.html ~Integrity~ Integrity is one of the several paths. It distinguishes itself from the others because it is the right path… and the only one upon which you will never get lost. -M.H. McKee

Response:

Sherry wrote: > Thanks J, you always answer your pages so quickly! > Happy New Year. > Hugs, > Sherry

<snip> Thanks to both of you! I found a really good faq on Still’s, and how it’s so similar to Lupus, etc, if anyone wants to read up on it. This faq is very clear. Looks like I was on the right track when I thought I had Lupus. It seems that lupus and still’s are so similar, as well as both being in the same family of connective tissue diseases. -Sharon — Visit my webpage: http://www.qc.edu/~sperlof1/stills/webpage.html ~Integrity~ Integrity is one of the several paths. It distinguishes itself from the others because it is the right path… and the only one upon which you will never get lost. -M.H. McKee

Response:

Sharon Perloff wrote: > Sherry wrote: >> Thanks J, you always answer your pages so quickly! >> Happy New Year. >> Hugs, >> Sherry > <snip> > Thanks to both of you! > I found a really good faq on Still’s, and how it’s so similar to Lupus, > etc, if anyone wants to read up on it. <snip>

Here’s the link: (DUH! sorry!) http://www.stillsdisease.org/faq’s.htm -Sharon — Visit my webpage: http://www.qc.edu/~sperlof1/stills/webpage.html ~Integrity~ Integrity is one of the several paths. It distinguishes itself from the others because it is the right path… and the only one upon which you will never get lost. -M.H. McKee

Response:

"Sharon Perloff" <noway…@hotmail.com> wrote in message:

| Here’s the link: (DUH! sorry!) | | http://www.stillsdisease.org/faq’s.htm </snip> http://members.tripod.com/stillsfoundation/new_page_1.htm http://members.tripod.com/stillsfoundation/member_histories.htm Here are two new links for you to check out Sharon… one has pictures of rashes and I remember you talking about getting those…. and the other is people talking about their dx of Stills and their symptoms and I thought that might interest you. — from Shelagh http://continue.to/lupus

Response:

Shelagh wrote: > "Sharon Perloff" <noway…@hotmail.com> wrote in message: > | Here’s the link: (DUH! sorry!) > | > | http://www.stillsdisease.org/faq’s.htm > </snip> > http://members.tripod.com/stillsfoundation/new_page_1.htm > http://members.tripod.com/stillsfoundation/member_histories.htm > Here are two new links for you to check out Sharon… one has pictures > of rashes and I remember you talking about getting those…. > and the other is people talking about their dx of Stills and their > symptoms and I thought that might interest you.

Thanks Shelah, Nowhere can I find pictures or mention of face rash. So the confusion continues until Sharon gets diagnosed (sees the rheumy), I guess. Hugs J

Response:

Sharon Perloff wrote: > I found a really good faq on Still’s, and how it’s so similar to Lupus, > etc, if anyone wants to read up on it. This faq is very clear. Looks > like I was on the right track when I thought I had Lupus. It seems that > lupus and still’s are so similar, as well as both being in the same > family of connective tissue diseases.

Hi Sharon, Still’s disease is one type of juvenile rheumatoid arthritis (JRA). Hugs J

Response:

- Hide quoted text — Show quoted text -Shelagh wrote: > "Sharon Perloff" <noway…@hotmail.com> wrote in message: > | Here’s the link: (DUH! sorry!) > | > | http://www.stillsdisease.org/faq’s.htm > </snip> > http://members.tripod.com/stillsfoundation/new_page_1.htm > http://members.tripod.com/stillsfoundation/member_histories.htm > Here are two new links for you to check out Sharon… one has pictures > of rashes and I remember you talking about getting those…. > and the other is people talking about their dx of Stills and their > symptoms and I thought that might interest you. > — > from Shelagh > http://continue.to/lupus

Thanks Shelagh! My rash is just like those rashes, only mine is on the face. -Sharon — Visit my webpage: http://www.qc.edu/~sperlof1/stills/webpage.html ~Integrity~ Integrity is one of the several paths. It distinguishes itself from the others because it is the right path… and the only one upon which you will never get lost. -M.H. McKee

Response:

J wrote: > Hi ya Sherry, > Bet’cha all thought I’d disappeared. Nope ! I’m reading and saw that I was > paged. LOL > Sherry wrote: >>J will probably come up with some other links for you but this should get >>you started.

<snip> Thanks J, I did read that site, and it frustrated me, ’cause it basically says that they have no clue when it comes to still’s. Then other places it says it’s autoimmune, etc. I guess I’ll have to ask my doc for some definitive answers when I see him next, if it’s what I have for sure. -Sharon — Visit my webpage: http://www.qc.edu/~sperlof1/stills/webpage.html ~Integrity~ Integrity is one of the several paths. It distinguishes itself from the others because it is the right path… and the only one upon which you will never get lost. -M.H. McKee

Response:

Thanks J, you always answer your pages so quickly! Happy New Year. Hugs, Sherry "J" <J…@NoSpam.invalid> wrote in message

news:3E0EE278.C79594A0@execulink.com… – Hide quoted text — Show quoted text -> Hi ya Sherry, > Bet’cha all thought I’d disappeared. Nope ! I’m reading and saw that I was > paged. LOL > Sherry wrote: > > J will probably come up with some other links for you but this should get > > you started. > http://www.stillsdisease.org/still’s_disease_info.htm > Still’s disease is a form of arthritis that is characterized by high spiking > fevers and evanescent (transient) salmon-colored rash. Still’s disease was first > described in children, but it is now known to occur, much less commonly, in > adults (in whom it is referred to as adult-onset Still’s disease). > What causes Still’s disease? > There have been a number of schools of thought. One is that Still’s disease is > due to infection with a microbe. Another concept is that Still’s disease is a > hypersensitive or autoimmune disorder. In truth, the cause of Still’s disease is > still not known. > How does Still’s disease fit in with juvenile rheumatoid arthritis? > Still’s disease is one type of juvenile rheumatoid arthritis (JRA) and is also > known as systemic-onset JRA. By "systemic" it is meant that along with joint > inflammation it typically begins with symptoms and signs of systemic (body wide) > illness, such as high fevers, gland swelling, and internal organ involvement. > Still’s disease is named after the English physician Sir George F. Still > (1861-1941). <end quote -will leave up to the reader> > I would think the first logical thing to do (to rule out infections) would be to > prescribe for some of the infections that don’t show up in bloodwork, urine > and/or other unmentionable places, but I’m not a physician. Maybe a good thing > eh? > Hugs > J

Response:

I’ve been trying to learn a bit about Still’s over the past two days, and so far I’m left confused. I’ve read conflicting info on whether or not it’s autoimmune, or if it’s actually arthritis, etc. Not sure exactly what it is, but I do know the treatments are the same, so I guess it’s not that important. I’m just wondering if anyone knows, or can find maybe some definitive info on this. -Sharon — ~Integrity~ Integrity is one of the several paths. It distinguishes itself from the others because it is the right path… and the only one upon which you will never get lost. -M.H. McKee

Response:

Sharon, Try this url and see if it answers any of your questions. Hopefully it doesn’t leave you more confused. www.nlm.nih.gov/medlineplus/ency/article/000451.htm#altnames if that doesn’t work for you go to and search for Stills www.nlm.nih.gov/medlineplus/enclyclopedia.html J will probably come up with some other links for you but this should get you started. Hugs, Sherry "Sharon Perloff" <noway…@hotmail.com> wrote in message

Response:

Sherry wrote: > Sharon, > Try this url and see if it answers any of your questions. Hopefully it > doesn’t leave you more confused. > www.nlm.nih.gov/medlineplus/ency/article/000451.htm#altnames > if that doesn’t work for you go to and search for Stills > www.nlm.nih.gov/medlineplus/enclyclopedia.html > J will probably come up with some other links for you but this should get > you started. > Hugs, > Sherry

<snip> Thanks Sherry! I will check them out. -Sharon — Visit my webpage: http://www.qc.edu/~sperlof1/stills/webpage.html ~Integrity~ Integrity is one of the several paths. It distinguishes itself from the others because it is the right path… and the only one upon which you will never get lost. -M.H. McKee

Response:

Hi ya Sherry, Bet’cha all thought I’d disappeared. Nope ! I’m reading and saw that I was paged. LOL Sherry wrote: > J will probably come up with some other links for you but this should get > you started.

http://www.stillsdisease.org/still’s_disease_info.htm Still’s disease is a form of arthritis that is characterized by high spiking fevers and evanescent (transient) salmon-colored rash. Still’s disease was first described in children, but it is now known to occur, much less commonly, in adults (in whom it is referred to as adult-onset Still’s disease). What causes Still’s disease? There have been a number of schools of thought. One is that Still’s disease is due to infection with a microbe. Another concept is that Still’s disease is a hypersensitive or autoimmune disorder. In truth, the cause of Still’s disease is still not known. How does Still’s disease fit in with juvenile rheumatoid arthritis? Still’s disease is one type of juvenile rheumatoid arthritis (JRA) and is also known as systemic-onset JRA. By "systemic" it is meant that along with joint inflammation it typically begins with symptoms and signs of systemic (body wide) illness, such as high fevers, gland swelling, and internal organ involvement. Still’s disease is named after the English physician Sir George F. Still (1861-1941). <end quote -will leave up to the reader> I would think the first logical thing to do (to rule out infections) would be to prescribe for some of the infections that don’t show up in bloodwork, urine and/or other unmentionable places, but I’m not a physician. Maybe a good thing eh? Hugs J

Response:

Posted in Rheumatoid Arthritis Lupus | No Comments » |

AIDS numbers in Africa

Question:

Who benefits? Lots of people. The entire AID$ industry, and their NGOs, all the people who keep doing the same old research on the same pregnant women, etc. The MRC in South Africa who keep doing studies trying to maximise the numer of HIV infected people they can come up with, Pfizer, Glaxo, you name it. Alex

Response:

From the following article, it is abundantly clear that the prevalence of HIV/AIDS in Africa is being grossly overestimated.

No it is not "abundantly clear". In true denialist fashion, you have tracked down one letter giving a low estimate of HIV in a specific scenario and let your imagination do the rest, ignoring the dozens of studies that make it abundantly clear that the prevalence in SA is high. Stuart Dwyer seems to have gone to ground. His original letter did not provide any detail on assays used, the prison sample or anything else of relevance. Repeated e-mails to him at the email address he gives requesting hard data are ignored. If an orthodox HIV believer had written a similar unverified letter with unreferenced and uncorroborated data, stating HIV prevalence was say 50%,the denialists would have been over him like a rash shouting "foul!". But because they see a "statistic" that shows low HIV prevalence, reinforcing their own idiotic ramblings, they uncritically accept it. And anyway, if these crowded prisons are packed with blacks infected with malaria and TB all having unprotected anal intercourse (prime reasons for having "false positive" HIV tests according to denialists) we would expect to see nearly 100% HIV rates, no? The prison HIV rates according to Fagan, published much later than Dyers little letter, indicated much higher rates, anyway.

Response:

From the following article, it is abundantly clear that the prevalence of HIV/AIDS in Africa is being grossly overestimated. No it is not "abundantly clear". In true denialist fashion, you have tracked down one letter giving a low estimate of HIV in a specific scenario and let your imagination do the rest, ignoring the dozens of studies that make it abundantly clear that the prevalence in SA is high.

I was watching a terrific video on a history of ACT UP/NY. 10-12 years ago we were chanting "50,000 Dead of AIDS. Where was George?" Then 100,000. Then 450,000. Now we chant 25 million. Nothing’s wrong. Everything’s fine. Right? George M. Carter

Response:

From the following article, it is abundantly clear that the prevalence of HIV/AIDS in Africa is being grossly overestimated. Who benefits from such scaremongering? Someone must be, otherwise they wouldn’t do it. Peter When will AIDS estimates be replaced by facts? Neenyah Ostrom — 02/25/2002 A letter to the British Medical Journal about the unexpectedly low incidence of HIV/AIDS in South Africa’s prison population has re-opened the debate about the role played by HIV in causing AIDS. The letter

Posted in Rheumatoid Arthritis Lupus | No Comments » |

Colitis

Question:

On Mon, 04 Nov 2002 03:15:05 GMT, Lynn J. <cr…@cox.net> wrote: >I am almost pain free. Is Plaquenil used for osteoarthritis?

J has pretty much answered this. >I recently went for a checkup with my PCP. She thinks that I either >have lupus or rheumatoid arthritis. She said that Plaquenil wouldn’t >have helped me if I didn’t have something systemic going on.

Even though J’s source is credible and probably correct, I would have a tendency to suspect a systemic autoimmune process if the Plaquenil has made inroads on your symptoms. (see my sig below for disclaimer!) I’ve had gastro problems for years myself and worsening problems there tend to coincide with "flares". I have also had less trouble with that in the last few months when I started taking a probiotic. (just a pill that has lots of colonies of L. bifidum and L. acidphilus in it.) Plaquenil can be rough on the tummy and I know that it isn’t entirely helpful to my gut problems *but* I find that taking it with food or milk prevents any potential reaction. It’s been so helpful for the rest of me that I settle for the risk to the gut. Especially since that risk can be controlled. That’s true for *me* and your doc should be the one to assess the safety vs. risk issue. You might ask about trying a probiotic though – I take one 3X a week because plaquenil and antibiotics can kill off these beneficial bacteria.

Response:

In article <onobsu8h2mnencae9o9rlqi5ptlft8n…@4ax.com>, Lynn J. <cr…@cox.net> wrote: > I feel like I am falling apart. But I really like my PCP. Let me > know if you know anything about this form of colitis.

It’s a mild disease characterized by changes in mucosa. I don’t have it, but biopsies for it are usually done on patients with spastic colon (also called IBS) as the symptoms can be similar.

Response:

"Lynn J." wrote: > I do not post very often

Well, it’s about time ! > but I wanted to give an update and also to > ask some questions. I have not be diagnosed with lupus. The only > test that is positive is the ANA test. My rheum keeps insisting that > I have osteoarthritis only.

Well, osteoarthritic changes can be seen sometimes on x-ray, sometimes on ultrasound. But some type of bone scan saw them in me, scattered throughout the body. Since steroid injections can affect the soft tissues (over time), I would think that plaquenil would be helpful for OA inflammation. http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202288.html " It is also used in the treatment of arthritis to help relieve inflammation, swelling, stiffness, and joint pain" (but looks like it can also complicate gastro problems. Have a look yourself and discuss with your doc, I guess. I can’t see swelling in the shoulders but sure have the rest, not excuding inflammation/pain all around the arm pit. > But back in June he gave me a > prescription for Plaquenil and this has really helped my joint pain. > I am almost pain free. Is Plaquenil used for osteoarthritis? > I recently went for a checkup with my PCP. She thinks that I either > have lupus or rheumatoid arthritis. She said that Plaquenil wouldn’t > have helped me if I didn’t have something systemic going on. The test > for RA is negative.

Not unusual, perhaps the answer is to treat symptomatically and/or get checked for some of the Lupus-specific antibodies? Has that been done? It takes some detective work and ruling things out and in, to figure out what exactly is going on. http://www.lupus.org/education/brochures/labtests.html New url for lab tests http://www.enetis.net/~rbreske/lab.htm http://www.mtio.com/lupus/lfalt1.htm (the differentials are mentioned here too) > I told her that my rheum thinks that I have > osteo. She said she doesn’t agree. I told my PCP that I am still > suffering with diarrhea. I was diagnosed with IBS about 15 years ago > and suffer all the time with diarrhea. My PCP said that the diarrhea > might be related to my arthritis. She is sending me to a colon rectal > doctor for a biopsy to see if I have collagenous colitis? Does anyone > have this?

Don’t think so. But here’s what I found http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Co… I guess what they’re saying is that the inflammation may not/probably wouldn’t show up on colonscopy, but a biopsy might be productive in diagnosing (or excluding) it. I think the other forms of colitis involve bleeding from the ulcerations in the lining of the bowel. So I would think that if a treatment protocol didn’t help and the situation worsened, perhaps it could lead to the more severe forms of colitis? (but don’t know). > My PCP also had me get an upper GI because of another problem. I now > have been diagnosed with a small hiatal hernia and GERD. > I feel like I am falling apart. But I really like my PCP. Let me > know if you know anything about this form of colitis.

Aaaack ! Don’t fall apart on us please. There’s treatment for GERD. Hang in there and do update us. J

Response:

I do not post very often but I wanted to give an update and also to ask some questions. I have not be diagnosed with lupus. The only test that is positive is the ANA test. My rheum keeps insisting that I have osteoarthritis only. But back in June he gave me a prescription for Plaquenil and this has really helped my joint pain. I am almost pain free. Is Plaquenil used for osteoarthritis? I recently went for a checkup with my PCP. She thinks that I either have lupus or rheumatoid arthritis. She said that Plaquenil wouldn’t have helped me if I didn’t have something systemic going on. The test for RA is negative. I told her that my rheum thinks that I have osteo. She said she doesn’t agree. I told my PCP that I am still suffering with diarrhea. I was diagnosed with IBS about 15 years ago and suffer all the time with diarrhea. My PCP said that the diarrhea might be related to my arthritis. She is sending me to a colon rectal doctor for a biopsy to see if I have collagenous colitis? Does anyone have this? My PCP also had me get an upper GI because of another problem. I now have been diagnosed with a small hiatal hernia and GERD. I feel like I am falling apart. But I really like my PCP. Let me know if you know anything about this form of colitis. Take Care, Lynn J.

Response:

Posted in Rheumatoid Arthritis Lupus | No Comments » |

plaquenil and methotrexate

Question:

Thanks for the info. If I under stand what I have read lupus causes low white blood count and the plaquenil helps stop this. The doctor took Sue off the plaquenil completely and told her to come to get blood work in one month and come see him in two months. We have about decided to find another doctor. I personally think she has to have something to help her. I know that lupus and arthritis will not cure its self. Denis & Sue

Response:

In article <10189-3DBB30B1-…@storefull-2371.public.lawson.webtv.net>, deniswi…@webtv.net (big dog) wrote:

Could you call the Doctor direct and ask those questions yourself. It is also wise to repeat to the Doctor what he says to you. There could always be miscommunication between Doctor and Nurse. Have had lupus 18 years and plaquenil has kept me going. Good luck to you both and we are sending our blessings Ruth & Paul – Hide quoted text — Show quoted text -> Thanks for the info. Sue never talked to the doctor. His office called > and the nurse told her what the doctor said. I thought that the > plaquenil helped on the white blood cell count but he took her of that > also. This doctor has never told her about the side effect of any of the > meds he has put her on. I think we will have to find another doc. Sue > has a lot of leg and joint pain and a lot of fatigue. She also has > trouble with her eyes burning. Denis & Sue

Response:

> Methotrexate > Its use in lupus has not been thoroughly tested, but it is given commonly > for rheumatoid arthritis and has been shown to produce improvement of joint > pain and stiffness. It is only modestly effective for organ-threatening > lupus.<snip>

I can’t remember where I read it, either in Dr. Wallace’s book or in a paper that he gave me to read, but when I started the methotrexate two years ago he was informing of me the expanded patient population expecting to benefit from the drug – namely moderate lupus patients without organ involvement but with severe joint pain and other symptoms (those who’ve transitioned from mild to moderate I guess is the best way to put it). It has been a miracle for me despite the way I feel after taking it, but I have no <knocking on wood> organ involvement. I don’t know if that helps…I’ll do some poking around my personal lupus article library (a lot of free time at the medical library can be VERY dangerous with me around) and maybe if I can’t find anything I’ll check out the medical school library here…just let me know if you’re interested in seeing what I’m talking about (hopefully I will be able to retrace my steps). Best of luck to you both. take care, jules

Response:

I’m so sorry. I’ll see what i can find in the meantime and will be in touch in the upcoming weeks. My condolences to you and yours. take care, julia "big dog" <deniswi…@webtv.net> wrote in message

news:21501-3DBEDB37-1177@storefull-2373.public.lawson.webtv.net… – Hide quoted text — Show quoted text -> I would be interested in any thing you can tell me. I wont be on for a > couple weeks as my aunt passed away and I will be gone for a couple of > weeks. Denis & Sue

Response:

I would be interested in any thing you can tell me. I wont be on for a couple weeks as my aunt passed away and I will be gone for a couple of weeks. Denis & Sue

Response:

Hi Denis, Lupus on it’s own can cause low white counts. Mine are always low. But, some meds can also lower the count too. I think mtx is one of them. I don’t know if the dosage Sue was on would do that, or to that degree. I am not sure what dosage is normal or average, but the amt you mentioned doesn’t seem high, and she has not been on it for long. There are some people here who are on mtx. They will likely have more to offer. I am on Imuran at 150mgs. The side effects could be quite different. Please tell Sue that I am thinking about her, and wishing her well. BJ-Sk. Canada "big dog" <deniswi…@webtv.net> wrote in message

news:21501-3DB9FA1F-409@storefull-2373.public.lawson.webtv.net… – Hide quoted text — Show quoted text -> First I would like to apologize for only posting when I have a problem. > I am not very good at this sort of thing and my wife is worse. Two > months back my wifes family doctor sent her to see a rummy as her blood > test showed positive for lupus. He took more blood and started her on > plaquenil and flexerill. Last month he did more blood work and added > methotrexate [4 pills once a week =10 mg for arthritis] When she went > this wednesday he changed the mtx to 6 pills or 15 mg a week. The doc > called today and said that her white blood count was dangerously low and > to stop all med except two mtx a week. Has any one had this problem or > know what med could cause this. Thanks for any info you can give. > Denis & Sue

Response:

First I would like to apologize for only posting when I have a problem. I am not very good at this sort of thing and my wife is worse. Two months back my wifes family doctor sent her to see a rummy as her blood test showed positive for lupus. He took more blood and started her on plaquenil and flexerill. Last month he did more blood work and added methotrexate [4 pills once a week =10 mg for arthritis] When she went this wednesday he changed the mtx to 6 pills or 15 mg a week. The doc called today and said that her white blood count was dangerously low and to stop all med except two mtx a week. Has any one had this problem or know what med could cause this. Thanks for any info you can give. Denis & Sue

Response:

On Fri, 25 Oct 2002 21:12:47 -0500 (CDT), deniswi…@webtv.net (big dog) wrote: >First I would like to apologize for only posting when I have a problem.

Stop that! There’s no reason to apologize for asking questions and worrying about your loved one. We understand – life is hectic enough without feeling unnecessary guilt. I don’t know enough about MTX to answer this fully. It is a chemo drug and therefore could conceivably cause the low cell #s. However, it’s also used to help that particular symptom. The disease itself could be the culprit – but unfortunately, as far as I know, the only way to know is to see if she bounces back from MTX to a better level. Even that will only be circumstantial because sometimes these drops come and go over very short times (I speak from personal experience on that one.) I’ve never had anything stronger than plaquenil and I suspect that were it not for that drug my "dips" in blood counts would be more worrisome. But I’ve had two that we’ve known about – down to 2.4 the first time, 2.6 the second. Within 3 weeks they were back up of their own accord (though they are never in the normal range.) 2.0 is typically when docs start worrying. Did he happen to give you the actual count? Do you know if it was the total WBC count or just lymphocytes? How has she felt through all this? (that’s more for my edification than trying to understand what’s happening.) KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq30.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’

Response:

big dog wrote: > First I would like to apologize for only posting when I have a problem. > I am not very good at this sort of thing and my wife is worse. Two > months back my wifes family doctor sent her to see a rummy as her blood > test showed positive for lupus. He took more blood and started her on > plaquenil and flexerill. Last month he did more blood work and added > methotrexate [4 pills once a week =10 mg for arthritis] When she went > this wednesday he changed the mtx to 6 pills or 15 mg a week. The doc > called today and said that her white blood count was dangerously low and > to stop all med except two mtx a week. Has any one had this problem or > know what med could cause this. Thanks for any info you can give. > Denis & Sue

Hello Denis, Apparently… http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202356.html Methotrexate can lower the number of white blood cells in your blood temporarily, increasing the chance of getting an infection. It can also lower the number of platelets, which are necessary for proper blood clotting. If this occurs, there are certain precautions you can take, especially when your blood count is low, to reduce the risk of infection or bleeding: <snip> but the same warning is on Imuran http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202077.html but not plaquenil (AFAIC) http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202288.html Other than the others’ wisdom, one has to weigh possible negatives to the symptomatic relief and/or whatever they are hoping to achieve with any particular medication. Here’s the final word, sort of http://www.lupus.org/education/brochures/immune.html Although immunosuppressive drugs can have serious side effects, they can be of great value in the treatment of systemic lupus erythematosus (SLE). They may help to: prolong life preserve kidney function reduce disease symptoms reduce damage to vital organs, such as the kidneys and lungs. sometimes even serve to put the disease into remission. Methotrexate Its use in lupus has not been thoroughly tested, but it is given commonly for rheumatoid arthritis and has been shown to produce improvement of joint pain and stiffness. It is only modestly effective for organ-threatening lupus.<snip> Hope this helps some. Best, J

Response:

Thanks for the info. Sue never talked to the doctor. His office called and the nurse told her what the doctor said. I thought that the plaquenil helped on the white blood cell count but he took her of that also. This doctor has never told her about the side effect of any of the meds he has put her on. I think we will have to find another doc. Sue has a lot of leg and joint pain and a lot of fatigue. She also has trouble with her eyes burning. Denis & Sue

Response:

Posted in Rheumatoid Arthritis Lupus | No Comments » |

What is this drug?

Question:

And one thing to remember, NEVER EVER drink any alcohol while on this medication. janers

Response:

methotrexate What is this med? I spoke with my PCP and he mentioned something about it. I am curious as to what this med is and how it works and at what "stage" it is used..

Response:

Methotrexate was initially used to treat different cancers because of its ability to inhibit rapidly dividing cells. It has subsequently been used with great success in diseases such as Rheumatoid Arthritis, Psoriasis, IBS and Lupus, to decrease the inflammatory response. However, the toxicity is mainly the same – aimed at cells that divide rapidly. These include white blood cells, platelets, mucosal surfaces (mouth, stomach, intestines), etc. Additional toxicities are liver fibrosis and occasional pulmonary fibrosis. These should be watched in all patients on methotrexate. Usually the vascular complications are pretty minimal. I have been on this drug in the recent past for my lupus and found it to be extremely helpful with getting me out of deep water with lupus flares and onto an easier road with less severity in the flares and finally was able to come off it (after just over 1 year) and still I am having an easier go of lupus flares. Pneumonia, for me, is the worst kind of flare in the past while, (barring migraines of course!). I would recommend trying methotrexate if it is suggested by your doc. Good luck to you and I am sure others will have some supportive comments for you too. Shelagh Co-ordinator Of Valley-Lupus – Invisible in Plain Sight http://www3.telus.net/valleylupus/index.html Subgroup of BC Lupus Society and Lupus Canada Email: valleylu…@telus.net "RhondaM" <woo…@intcon.net> wrote in message

news:1029539099.571086@localhost.localdomain… – Hide quoted text — Show quoted text -> methotrexate > What is this med? I spoke with my PCP and he mentioned something about it. I > am curious as to what this med is and how it works and at what "stage" it is > used..

Response:

On Fri, 16 Aug 2002 18:04:02 -0500, "RhondaM" <woo…@intcon.net> wrote: >methotrexate >What is this med? I spoke with my PCP and he mentioned something about it. I >am curious as to what this med is and how it works and at what "stage" it is >used..

Shelagh already covered the technical aspects of MTX. As far as what stage it is used at. It is used at all stages of disease. It isn’t a "mild" drug but probably one of the safer ones for getting a flare under control. I’ve known folks who didn’t get help from plaquenil and were then put on MTX which worked very well for them. So you don’t have to have life-threatening illness to go on this drug. Many patients take it to reduce the amount of prednisone they would otherwise need to take. None of this means it’s innocuous. But if *I had* to step up my meds due to a flare, I’d push for MTX first. KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq30.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’

Response:

Posted in Rheumatoid Arthritis Lupus | No Comments » |

Kids & Moms MS

Question:

yep….I was one of those too! — Cyberhugs, DianeW "Jennifer" <jpnos…@telus.net> wrote in message

news:Fo139.3897$X5.237083@news2.telusplanet.net… – Hide quoted text — Show quoted text -> I’ll be in school probably for another 5 years (until I’m 30)..2 degrees > down and 1 more to go..if not 2. Not something my parents are looking > forward to…the permanent student..lol > "DiWitt" <DiW…@NOSPAMcfl.rr.com> wrote in message > news:I_039.86175$s8.1596435@twister.tampabay.rr.com… > > Jen – I’m one of those mothers who waited to have my kids. I was 35 when > > Nick was born. I used to think I wish I had him earlier, when I was > younger > > and more spry. But then, maybe if I had him in my 20’s the MS would have > > just come sooner. Who knows. I’m sure glad I have him though. > > — > > Cyberhugs, > > DianeW > > "Jennifer" <jpnos…@telus.net> wrote in message > > news:62039.3877$X5.227681@news2.telusplanet.net… > > > Thanks for discussing this topic. I dont have any kids, and haven’t > > decided > > > if I am going to have any, but hearing all these wonderful stories give > me > > a > > > lot of ideas that I’m filing in the back of my head for maybe "one day" > > > Jen > > > "DiWitt" <DiW…@NOSPAMcfl.rr.com> wrote in message > > > news:E6%29.85789$s8.1580731@twister.tampabay.rr.com… > > > > When I was having trouble with Nick doing chores, we assigned a price > to > > > > them. He got an allowance not for doing chores, but just for being. > > > > However, if he DIDN’T do his chores, he got his allowance "docked". > At > > > one > > > > point I remember charging him 25 cents each day I picked him up at > > school > > > > and his shoes were untied! That lasted until he owed me $2.00! And > > then > > > he > > > > finally tied his shoes! Nick would get one dollar for each year, so > if > > he > > > > was 5, he got five dollars, etc. He has always been motivated by > > money. > > > > As he got older, the chores are more costly. If he won’t vacuum and > > wash > > > > the car, and I have to take it to the car wash, he owes me whatever I > > had > > > to > > > > pay to get it done. So it’s his choice, as long as it gets done. > > > > Hopefully getting the girls involved in the list making and a positive > > > > reward will help take the stress off of you. Good luck and let me > know > > > how > > > > it goes! > > > > — > > > > Cyberhugs, > > > > DianeW > > > > "jd" <kjdowl…@commspeed.net> wrote in message > > > > news:1028417416.213011@news.commspeed.net… > > > > > Thank you Diane for the advice! It was great and I am going to try > > > > planning > > > > > better. I plan for myself by writing "to do" lists so I feel like I > > > have > > > > > done something everyday (was once a work-aholic as a medical office > > > > manager > > > > > and always had a since that I was getting things done, that was a > hard > > > > thing > > > > > to give up!!!). I have typed up cute "chore" lists for the girls > with > > > > > little success. I will keep trying!! My husband is great and will > > try > > > to > > > > > do everything after he gets home from work, that will eventually get > > old > > > > for > > > > > him I’m sure. > > > > > It is really nice to know that life can be somewhat normal in the > face > > > of > > > > > true adversity!!! Great advice!! > > > > > Smiles!! > > > > > Kami > > > > > DiWitt <DiW…@NOSPAMcfl.rr.com> wrote in message > > > > > news:8_Y29.205529$XH.4699920@twister.tampabay.rr.com… > > > > > > My son was about 10 when I was diagnosed with MS but I had already > > > been > > > > > ill > > > > > > for 7 years with Rheumatoid Arthritis. He took it very well and > was > > > > very > > > > > > understanding until this past year. He is almost 15 now and was > > very > > > > > > difficult last year. Of course, that’s partly the age I’m sure. I > > > gave > > > > > him > > > > > > a booklet put out by the MS Society for teens on MS even though at > > 10 > > > he > > > > > was > > > > > > preteen. It seemed to answer his questions the best. I had been > > thru > > > > > many > > > > > > other possible dx that were worse than MS in his opinion prior to > my > > > > > > diagnosis. When they thought I had lupus, he asked "Are you going > > to > > > > > die?" > > > > > > I told him then, since sometimes lupus is fatal, "Well, we all are > > > going > > > > > to > > > > > > die sometime and I don’t think my time is close yet." He asked > the > > > same > > > > > > question about MS. I explained the basics of it to him using the > > lamp > > > > > cord > > > > > > analogy and answered his questions as they come up. He asks his > > > science > > > > > > teachers alot about MS they tell me. I think it makes them > > > > uncomfortable. > > > > > > He also has a friend whose mother has MS and they are a good > source > > of > > > > > hand > > > > > > holding for each other. The hardest part is the ups and downs. > > When > > > I > > > > > have > > > > > > a good spell, no one in the family adjusts too easily to the > > setback. > > > > It > > > > > > takes a while for them to remember that not all days are going to > be > > > as > > > > > good > > > > > > as the good days get. > > > > > > I rely on both my son and husband to pick up the slack of what I > > can’t > > > > do. > > > > > > I don’t want it to feel like I’m sloughing off my responsibilities > > on > > > > him, > > > > > > that as a child he is my caretaker so we do it by everyone having > > > jobs > > > > > > according to their abilities. Everyone takes a turn cooking one > > > night. > > > > > When > > > > > > we plan the weekly meals at dinner one night, Nick can choose what > > he > > > > > wants > > > > > > to cook. He makes great tacos and bacon and eggs. He learned how > to > > > > cook > > > > > in > > > > > > boy scouts so that’s a plus. If you cook, you don’t have to do > > dishes > > > > here > > > > > > which is my son’s normal chore so he is glad to cook. Everyone > has > > > jobs > > > > > to > > > > > > do when we leave the house. Nick, preparing for his drivers > > license, > > > is > > > > > > happy to be the one to start the car and cool it down for Mom. He > > > will > > > > > also > > > > > > get a cooler with cool ties or ice packs and put it in the van > > before > > > we > > > > > > leave. I can lock the inside doors and take care of the dog, etc. > > By > > > > > > emphasizing what I can do, I find that Nick feels better about > what > > he > > > > is > > > > > > doing around here to help out rather than feeling like, Oh, I have > > to > > > > take > > > > > > care of Mom again. Sometimes we make lists of who has what to do > > > > > especially > > > > > > if its out of the ordinary like getting ready for Christmas or > going > > > on > > > > > > vacation. If your youngest can’t read yet, the two of you could > > paste > > > > > > pictures on note cards for her chores. By involving her in the > > process > > > > it > > > > > > might give her a better feeling about doing it…at least for a > > while > > > > > > anyway! I try to think of time/energy saving things also. For > > example, > > > > in > > > > > > the laundry room, I have the baskets labeled for sorting and > > everyone > > > > puts > > > > > > their own clothes there at the end of the day. It makes throwing > a > > > load > > > > > of > > > > > > laundry in easier when you don’t have to sort the colors first or > > run > > > > > around > > > > > > the house gathering it all up. Believe it or not, sorting laundry > > was > > > a > > > > > big > > > > > > thrill for my son when I first started that up! Now, it’s habit > for > > > > > > everyone. > > > > > > I also plan for down days. Monday is my down day. This was > actually > > a > > > > > > suggestion of my neuro and really helped me. I stay in my jammies > > all > > > > day > > > > > > and am either on the couch or in the bed. Monday is carry out for > > > food > > > > or > > > > > > someone else cooks. It allows me to recover from the weekend > which > > > is > > > > > > usually a busy and hectic time around the house with my driving > him > > to > > > > > lots > > > > > > of functions. It also lets everyone else know that that’s Mom’s > day > > > off > > > > > and > > > > > > no one should plan anything for her to do. No car pool on Monday, > > no > > > > > got’s > > > > > > to haves at the last minute. Even my extended family and friends > > know > > > > now > > > > > > not to call or plan anything for Monday. By planning down time, > its > > > > more > > > > > > predictable to my son and he is not caught off guard by it and not > > so > > > > > angry > > > > > > about Mom being unavailable. Monday is simply off limits. It’s > kind > > > of > > > > > like > > > > > > telling your kids that they have to go to bed in 15 minutes – they > > > react > > > > > > better when you announce bedtime when they have had some > preparation > > > > > first. > > > > > > This is especially true, the younger the child is. > > > > > > Not that everything is always smooth going here, but I found these > > > > things > > > > > > help in our house. Maybe you can find something in it that will > > help > > > in > > > > > > yours. Look at your daily schedule and see how you can structure > it > > > so > > > > > that > > > > > > you can prep your youngest especially as much as possible. I > always > > > try > > > > > to > > > > > > take my nap before my son gets home from school so that I’m > > available > > > to > > > > > him > > > > > > when he does arrive home. He is so used to me napping that he > comes > > > in > > > > > very > > > > > > quietly so as not to wake me now, even though I’m not into an > > everyday > > > > nap > > > > > > these days. So I guess I’m thinking as I read over what I’ve typed > > > here, > > > > > > that this is very similar to what

Response:

I’ll be in school probably for another 5 years (until I’m 30)..2 degrees down and 1 more to go..if not 2. Not something my parents are looking forward to…the permanent student..lol "DiWitt" <DiW…@NOSPAMcfl.rr.com> wrote in message

news:I_039.86175$s8.1596435@twister.tampabay.rr.com… – Hide quoted text — Show quoted text -> Jen – I’m one of those mothers who waited to have my kids. I was 35 when > Nick was born. I used to think I wish I had him earlier, when I was younger > and more spry. But then, maybe if I had him in my 20’s the MS would have > just come sooner. Who knows. I’m sure glad I have him though. > — > Cyberhugs, > DianeW > "Jennifer" <jpnos…@telus.net> wrote in message > news:62039.3877$X5.227681@news2.telusplanet.net… > > Thanks for discussing this topic. I dont have any kids, and haven’t > decided > > if I am going to have any, but hearing all these wonderful stories give me > a > > lot of ideas that I’m filing in the back of my head for maybe "one day" > > Jen > > "DiWitt" <DiW…@NOSPAMcfl.rr.com> wrote in message > > news:E6%29.85789$s8.1580731@twister.tampabay.rr.com… > > > When I was having trouble with Nick doing chores, we assigned a price to > > > them. He got an allowance not for doing chores, but just for being. > > > However, if he DIDN’T do his chores, he got his allowance "docked". At > > one > > > point I remember charging him 25 cents each day I picked him up at > school > > > and his shoes were untied! That lasted until he owed me $2.00! And > then > > he > > > finally tied his shoes! Nick would get one dollar for each year, so if > he > > > was 5, he got five dollars, etc. He has always been motivated by > money. > > > As he got older, the chores are more costly. If he won’t vacuum and > wash > > > the car, and I have to take it to the car wash, he owes me whatever I > had > > to > > > pay to get it done. So it’s his choice, as long as it gets done. > > > Hopefully getting the girls involved in the list making and a positive > > > reward will help take the stress off of you. Good luck and let me know > > how > > > it goes! > > > — > > > Cyberhugs, > > > DianeW > > > "jd" <kjdowl…@commspeed.net> wrote in message > > > news:1028417416.213011@news.commspeed.net… > > > > Thank you Diane for the advice! It was great and I am going to try > > > planning > > > > better. I plan for myself by writing "to do" lists so I feel like I > > have > > > > done something everyday (was once a work-aholic as a medical office > > > manager > > > > and always had a since that I was getting things done, that was a hard > > > thing > > > > to give up!!!). I have typed up cute "chore" lists for the girls with > > > > little success. I will keep trying!! My husband is great and will > try > > to > > > > do everything after he gets home from work, that will eventually get > old > > > for > > > > him I’m sure. > > > > It is really nice to know that life can be somewhat normal in the face > > of > > > > true adversity!!! Great advice!! > > > > Smiles!! > > > > Kami > > > > DiWitt <DiW…@NOSPAMcfl.rr.com> wrote in message > > > > news:8_Y29.205529$XH.4699920@twister.tampabay.rr.com… > > > > > My son was about 10 when I was diagnosed with MS but I had already > > been > > > > ill > > > > > for 7 years with Rheumatoid Arthritis. He took it very well and was > > > very > > > > > understanding until this past year. He is almost 15 now and was > very > > > > > difficult last year. Of course, that’s partly the age I’m sure. I > > gave > > > > him > > > > > a booklet put out by the MS Society for teens on MS even though at > 10 > > he > > > > was > > > > > preteen. It seemed to answer his questions the best. I had been > thru > > > > many > > > > > other possible dx that were worse than MS in his opinion prior to my > > > > > diagnosis. When they thought I had lupus, he asked "Are you going > to > > > > die?" > > > > > I told him then, since sometimes lupus is fatal, "Well, we all are > > going > > > > to > > > > > die sometime and I don’t think my time is close yet." He asked the > > same > > > > > question about MS. I explained the basics of it to him using the > lamp > > > > cord > > > > > analogy and answered his questions as they come up. He asks his > > science > > > > > teachers alot about MS they tell me. I think it makes them > > > uncomfortable. > > > > > He also has a friend whose mother has MS and they are a good source > of > > > > hand > > > > > holding for each other. The hardest part is the ups and downs. > When > > I > > > > have > > > > > a good spell, no one in the family adjusts too easily to the > setback. > > > It > > > > > takes a while for them to remember that not all days are going to be > > as > > > > good > > > > > as the good days get. > > > > > I rely on both my son and husband to pick up the slack of what I > can’t > > > do. > > > > > I don’t want it to feel like I’m sloughing off my responsibilities > on > > > him, > > > > > that as a child he is my caretaker so we do it by everyone having > > jobs > > > > > according to their abilities. Everyone takes a turn cooking one > > night. > > > > When > > > > > we plan the weekly meals at dinner one night, Nick can choose what > he > > > > wants > > > > > to cook. He makes great tacos and bacon and eggs. He learned how to > > > cook > > > > in > > > > > boy scouts so that’s a plus. If you cook, you don’t have to do > dishes > > > here > > > > > which is my son’s normal chore so he is glad to cook. Everyone has > > jobs > > > > to > > > > > do when we leave the house. Nick, preparing for his drivers > license, > > is > > > > > happy to be the one to start the car and cool it down for Mom. He > > will > > > > also > > > > > get a cooler with cool ties or ice packs and put it in the van > before > > we > > > > > leave. I can lock the inside doors and take care of the dog, etc. > By > > > > > emphasizing what I can do, I find that Nick feels better about what > he > > > is > > > > > doing around here to help out rather than feeling like, Oh, I have > to > > > take > > > > > care of Mom again. Sometimes we make lists of who has what to do > > > > especially > > > > > if its out of the ordinary like getting ready for Christmas or going > > on > > > > > vacation. If your youngest can’t read yet, the two of you could > paste > > > > > pictures on note cards for her chores. By involving her in the > process > > > it > > > > > might give her a better feeling about doing it…at least for a > while > > > > > anyway! I try to think of time/energy saving things also. For > example, > > > in > > > > > the laundry room, I have the baskets labeled for sorting and > everyone > > > puts > > > > > their own clothes there at the end of the day. It makes throwing a > > load > > > > of > > > > > laundry in easier when you don’t have to sort the colors first or > run > > > > around > > > > > the house gathering it all up. Believe it or not, sorting laundry > was > > a > > > > big > > > > > thrill for my son when I first started that up! Now, it’s habit for > > > > > everyone. > > > > > I also plan for down days. Monday is my down day. This was actually > a > > > > > suggestion of my neuro and really helped me. I stay in my jammies > all > > > day > > > > > and am either on the couch or in the bed. Monday is carry out for > > food > > > or > > > > > someone else cooks. It allows me to recover from the weekend which > > is > > > > > usually a busy and hectic time around the house with my driving him > to > > > > lots > > > > > of functions. It also lets everyone else know that that’s Mom’s day > > off > > > > and > > > > > no one should plan anything for her to do. No car pool on Monday, > no > > > > got’s > > > > > to haves at the last minute. Even my extended family and friends > know > > > now > > > > > not to call or plan anything for Monday. By planning down time, its > > > more > > > > > predictable to my son and he is not caught off guard by it and not > so > > > > angry > > > > > about Mom being unavailable. Monday is simply off limits. It’s kind > > of > > > > like > > > > > telling your kids that they have to go to bed in 15 minutes – they > > react > > > > > better when you announce bedtime when they have had some preparation > > > > first. > > > > > This is especially true, the younger the child is. > > > > > Not that everything is always smooth going here, but I found these > > > things > > > > > help in our house. Maybe you can find something in it that will > help > > in > > > > > yours. Look at your daily schedule and see how you can structure it > > so > > > > that > > > > > you can prep your youngest especially as much as possible. I always > > try > > > > to > > > > > take my nap before my son gets home from school so that I’m > available > > to > > > > him > > > > > when he does arrive home. He is so used to me napping that he comes > > in > > > > very > > > > > quietly so as not to wake me now, even though I’m not into an > everyday > > > nap > > > > > these days. So I guess I’m thinking as I read over what I’ve typed > > here, > > > > > that this is very similar to what all the books tell us to do with > our > > > > kids. > > > > > Be consistent, and try to plan with them what you expect of them in > > the > > > > > family. Our needs with MS are different, but the advice is the > same. > > > Try > > > > > to expect the same things from them when you have good days and bad > > > > > days…that way it’s not such a big difference when you do have a > > flare. > > > > > Also, our MS society here had a weekend campout for the children of > MS > > > > > parents. Ages 7-17. Nick didn’t go since it conflicted with other > > > plans > > > > > but I heard it was a very good weekend. Not only did it give the > kids > > a > > > > > chance to do summer camping which in Florida is impossible

Response:

Jen – I’m one of those mothers who waited to have my kids. I was 35 when Nick was born. I used to think I wish I had him earlier, when I was younger and more spry. But then, maybe if I had him in my 20’s the MS would have just come sooner. Who knows. I’m sure glad I have him though. — Cyberhugs, DianeW "Jennifer" <jpnos…@telus.net> wrote in message

news:62039.3877$X5.227681@news2.telusplanet.net… – Hide quoted text — Show quoted text -> Thanks for discussing this topic. I dont have any kids, and haven’t decided > if I am going to have any, but hearing all these wonderful stories give me a > lot of ideas that I’m filing in the back of my head for maybe "one day" > Jen > "DiWitt" <DiW…@NOSPAMcfl.rr.com> wrote in message > news:E6%29.85789$s8.1580731@twister.tampabay.rr.com… > > When I was having trouble with Nick doing chores, we assigned a price to > > them. He got an allowance not for doing chores, but just for being. > > However, if he DIDN’T do his chores, he got his allowance "docked". At > one > > point I remember charging him 25 cents each day I picked him up at school > > and his shoes were untied! That lasted until he owed me $2.00! And then > he > > finally tied his shoes! Nick would get one dollar for each year, so if he > > was 5, he got five dollars, etc. He has always been motivated by money. > > As he got older, the chores are more costly. If he won’t vacuum and wash > > the car, and I have to take it to the car wash, he owes me whatever I had > to > > pay to get it done. So it’s his choice, as long as it gets done. > > Hopefully getting the girls involved in the list making and a positive > > reward will help take the stress off of you. Good luck and let me know > how > > it goes! > > — > > Cyberhugs, > > DianeW > > "jd" <kjdowl…@commspeed.net> wrote in message > > news:1028417416.213011@news.commspeed.net… > > > Thank you Diane for the advice! It was great and I am going to try > > planning > > > better. I plan for myself by writing "to do" lists so I feel like I > have > > > done something everyday (was once a work-aholic as a medical office > > manager > > > and always had a since that I was getting things done, that was a hard > > thing > > > to give up!!!). I have typed up cute "chore" lists for the girls with > > > little success. I will keep trying!! My husband is great and will try > to > > > do everything after he gets home from work, that will eventually get old > > for > > > him I’m sure. > > > It is really nice to know that life can be somewhat normal in the face > of > > > true adversity!!! Great advice!! > > > Smiles!! > > > Kami > > > DiWitt <DiW…@NOSPAMcfl.rr.com> wrote in message > > > news:8_Y29.205529$XH.4699920@twister.tampabay.rr.com… > > > > My son was about 10 when I was diagnosed with MS but I had already > been > > > ill > > > > for 7 years with Rheumatoid Arthritis. He took it very well and was > > very > > > > understanding until this past year. He is almost 15 now and was very > > > > difficult last year. Of course, that’s partly the age I’m sure. I > gave > > > him > > > > a booklet put out by the MS Society for teens on MS even though at 10 > he > > > was > > > > preteen. It seemed to answer his questions the best. I had been thru > > > many > > > > other possible dx that were worse than MS in his opinion prior to my > > > > diagnosis. When they thought I had lupus, he asked "Are you going to > > > die?" > > > > I told him then, since sometimes lupus is fatal, "Well, we all are > going > > > to > > > > die sometime and I don’t think my time is close yet." He asked the > same > > > > question about MS. I explained the basics of it to him using the lamp > > > cord > > > > analogy and answered his questions as they come up. He asks his > science > > > > teachers alot about MS they tell me. I think it makes them > > uncomfortable. > > > > He also has a friend whose mother has MS and they are a good source of > > > hand > > > > holding for each other. The hardest part is the ups and downs. When > I > > > have > > > > a good spell, no one in the family adjusts too easily to the setback. > > It > > > > takes a while for them to remember that not all days are going to be > as > > > good > > > > as the good days get. > > > > I rely on both my son and husband to pick up the slack of what I can’t > > do. > > > > I don’t want it to feel like I’m sloughing off my responsibilities on > > him, > > > > that as a child he is my caretaker so we do it by everyone having > jobs > > > > according to their abilities. Everyone takes a turn cooking one > night. > > > When > > > > we plan the weekly meals at dinner one night, Nick can choose what he > > > wants > > > > to cook. He makes great tacos and bacon and eggs. He learned how to > > cook > > > in > > > > boy scouts so that’s a plus. If you cook, you don’t have to do dishes > > here > > > > which is my son’s normal chore so he is glad to cook. Everyone has > jobs > > > to > > > > do when we leave the house. Nick, preparing for his drivers license, > is > > > > happy to be the one to start the car and cool it down for Mom. He > will > > > also > > > > get a cooler with cool ties or ice packs and put it in the van before > we > > > > leave. I can lock the inside doors and take care of the dog, etc. By > > > > emphasizing what I can do, I find that Nick feels better about what he > > is > > > > doing around here to help out rather than feeling like, Oh, I have to > > take > > > > care of Mom again. Sometimes we make lists of who has what to do > > > especially > > > > if its out of the ordinary like getting ready for Christmas or going > on > > > > vacation. If your youngest can’t read yet, the two of you could paste > > > > pictures on note cards for her chores. By involving her in the process > > it > > > > might give her a better feeling about doing it…at least for a while > > > > anyway! I try to think of time/energy saving things also. For example, > > in > > > > the laundry room, I have the baskets labeled for sorting and everyone > > puts > > > > their own clothes there at the end of the day. It makes throwing a > load > > > of > > > > laundry in easier when you don’t have to sort the colors first or run > > > around > > > > the house gathering it all up. Believe it or not, sorting laundry was > a > > > big > > > > thrill for my son when I first started that up! Now, it’s habit for > > > > everyone. > > > > I also plan for down days. Monday is my down day. This was actually a > > > > suggestion of my neuro and really helped me. I stay in my jammies all > > day > > > > and am either on the couch or in the bed. Monday is carry out for > food > > or > > > > someone else cooks. It allows me to recover from the weekend which > is > > > > usually a busy and hectic time around the house with my driving him to > > > lots > > > > of functions. It also lets everyone else know that that’s Mom’s day > off > > > and > > > > no one should plan anything for her to do. No car pool on Monday, no > > > got’s > > > > to haves at the last minute. Even my extended family and friends know > > now > > > > not to call or plan anything for Monday. By planning down time, its > > more > > > > predictable to my son and he is not caught off guard by it and not so > > > angry > > > > about Mom being unavailable. Monday is simply off limits. It’s kind > of > > > like > > > > telling your kids that they have to go to bed in 15 minutes – they > react > > > > better when you announce bedtime when they have had some preparation > > > first. > > > > This is especially true, the younger the child is. > > > > Not that everything is always smooth going here, but I found these > > things > > > > help in our house. Maybe you can find something in it that will help > in > > > > yours. Look at your daily schedule and see how you can structure it > so > > > that > > > > you can prep your youngest especially as much as possible. I always > try > > > to > > > > take my nap before my son gets home from school so that I’m available > to > > > him > > > > when he does arrive home. He is so used to me napping that he comes > in > > > very > > > > quietly so as not to wake me now, even though I’m not into an everyday > > nap > > > > these days. So I guess I’m thinking as I read over what I’ve typed > here, > > > > that this is very similar to what all the books tell us to do with our > > > kids. > > > > Be consistent, and try to plan with them what you expect of them in > the > > > > family. Our needs with MS are different, but the advice is the same. > > Try > > > > to expect the same things from them when you have good days and bad > > > > days…that way it’s not such a big difference when you do have a > flare. > > > > Also, our MS society here had a weekend campout for the children of MS > > > > parents. Ages 7-17. Nick didn’t go since it conflicted with other > > plans > > > > but I heard it was a very good weekend. Not only did it give the kids > a > > > > chance to do summer camping which in Florida is impossible for MSer’s > > but > > > > there were counselors there to provide a sounding block for those who > > > > desired it. Maybe your local organization has something similar they > > > offer > > > > during the regular support meetings. > > > > Hope this helps! > > > > — > > > > Cyberhugs, > > > > DianeW > > > > "jd" <kjdowl…@commspeed.net> wrote in message > > > > news:1028393821.72760@news.commspeed.net… > > > > > Hi Everyone, > > > > > I need some advice. I have 2 girls, one 10yrs old and one 6yrs old. > > My > > > > > oldest is great about my MS, she understands that I am limited and > > have > > > my > > > > > bad days. She rubs my neck and helps a bit around the house. As > for > > my > > > 6 > > > > > yr old, she pushes every button I have. She can’t seem to > understand,

Response:

Thanks for discussing this topic. I dont have any kids, and haven’t decided if I am going to have any, but hearing all these wonderful stories give me a lot of ideas that I’m filing in the back of my head for maybe "one day" Jen "DiWitt" <DiW…@NOSPAMcfl.rr.com> wrote in message

news:E6%29.85789$s8.1580731@twister.tampabay.rr.com… – Hide quoted text — Show quoted text -> When I was having trouble with Nick doing chores, we assigned a price to > them. He got an allowance not for doing chores, but just for being. > However, if he DIDN’T do his chores, he got his allowance "docked". At one > point I remember charging him 25 cents each day I picked him up at school > and his shoes were untied! That lasted until he owed me $2.00! And then he > finally tied his shoes! Nick would get one dollar for each year, so if he > was 5, he got five dollars, etc. He has always been motivated by money. > As he got older, the chores are more costly. If he won’t vacuum and wash > the car, and I have to take it to the car wash, he owes me whatever I had to > pay to get it done. So it’s his choice, as long as it gets done. > Hopefully getting the girls involved in the list making and a positive > reward will help take the stress off of you. Good luck and let me know how > it goes! > — > Cyberhugs, > DianeW > "jd" <kjdowl…@commspeed.net> wrote in message > news:1028417416.213011@news.commspeed.net… > > Thank you Diane for the advice! It was great and I am going to try > planning > > better. I plan for myself by writing "to do" lists so I feel like I have > > done something everyday (was once a work-aholic as a medical office > manager > > and always had a since that I was getting things done, that was a hard > thing > > to give up!!!). I have typed up cute "chore" lists for the girls with > > little success. I will keep trying!! My husband is great and will try to > > do everything after he gets home from work, that will eventually get old > for > > him I’m sure. > > It is really nice to know that life can be somewhat normal in the face of > > true adversity!!! Great advice!! > > Smiles!! > > Kami > > DiWitt <DiW…@NOSPAMcfl.rr.com> wrote in message > > news:8_Y29.205529$XH.4699920@twister.tampabay.rr.com… > > > My son was about 10 when I was diagnosed with MS but I had already been > > ill > > > for 7 years with Rheumatoid Arthritis. He took it very well and was > very > > > understanding until this past year. He is almost 15 now and was very > > > difficult last year. Of course, that’s partly the age I’m sure. I gave > > him > > > a booklet put out by the MS Society for teens on MS even though at 10 he > > was > > > preteen. It seemed to answer his questions the best. I had been thru > > many > > > other possible dx that were worse than MS in his opinion prior to my > > > diagnosis. When they thought I had lupus, he asked "Are you going to > > die?" > > > I told him then, since sometimes lupus is fatal, "Well, we all are going > > to > > > die sometime and I don’t think my time is close yet." He asked the same > > > question about MS. I explained the basics of it to him using the lamp > > cord > > > analogy and answered his questions as they come up. He asks his science > > > teachers alot about MS they tell me. I think it makes them > uncomfortable. > > > He also has a friend whose mother has MS and they are a good source of > > hand > > > holding for each other. The hardest part is the ups and downs. When I > > have > > > a good spell, no one in the family adjusts too easily to the setback. > It > > > takes a while for them to remember that not all days are going to be as > > good > > > as the good days get. > > > I rely on both my son and husband to pick up the slack of what I can’t > do. > > > I don’t want it to feel like I’m sloughing off my responsibilities on > him, > > > that as a child he is my caretaker so we do it by everyone having jobs > > > according to their abilities. Everyone takes a turn cooking one night. > > When > > > we plan the weekly meals at dinner one night, Nick can choose what he > > wants > > > to cook. He makes great tacos and bacon and eggs. He learned how to > cook > > in > > > boy scouts so that’s a plus. If you cook, you don’t have to do dishes > here > > > which is my son’s normal chore so he is glad to cook. Everyone has jobs > > to > > > do when we leave the house. Nick, preparing for his drivers license, is > > > happy to be the one to start the car and cool it down for Mom. He will > > also > > > get a cooler with cool ties or ice packs and put it in the van before we > > > leave. I can lock the inside doors and take care of the dog, etc. By > > > emphasizing what I can do, I find that Nick feels better about what he > is > > > doing around here to help out rather than feeling like, Oh, I have to > take > > > care of Mom again. Sometimes we make lists of who has what to do > > especially > > > if its out of the ordinary like getting ready for Christmas or going on > > > vacation. If your youngest can’t read yet, the two of you could paste > > > pictures on note cards for her chores. By involving her in the process > it > > > might give her a better feeling about doing it…at least for a while > > > anyway! I try to think of time/energy saving things also. For example, > in > > > the laundry room, I have the baskets labeled for sorting and everyone > puts > > > their own clothes there at the end of the day. It makes throwing a load > > of > > > laundry in easier when you don’t have to sort the colors first or run > > around > > > the house gathering it all up. Believe it or not, sorting laundry was a > > big > > > thrill for my son when I first started that up! Now, it’s habit for > > > everyone. > > > I also plan for down days. Monday is my down day. This was actually a > > > suggestion of my neuro and really helped me. I stay in my jammies all > day > > > and am either on the couch or in the bed. Monday is carry out for food > or > > > someone else cooks. It allows me to recover from the weekend which is > > > usually a busy and hectic time around the house with my driving him to > > lots > > > of functions. It also lets everyone else know that that’s Mom’s day off > > and > > > no one should plan anything for her to do. No car pool on Monday, no > > got’s > > > to haves at the last minute. Even my extended family and friends know > now > > > not to call or plan anything for Monday. By planning down time, its > more > > > predictable to my son and he is not caught off guard by it and not so > > angry > > > about Mom being unavailable. Monday is simply off limits. It’s kind of > > like > > > telling your kids that they have to go to bed in 15 minutes – they react > > > better when you announce bedtime when they have had some preparation > > first. > > > This is especially true, the younger the child is. > > > Not that everything is always smooth going here, but I found these > things > > > help in our house. Maybe you can find something in it that will help in > > > yours. Look at your daily schedule and see how you can structure it so > > that > > > you can prep your youngest especially as much as possible. I always try > > to > > > take my nap before my son gets home from school so that I’m available to > > him > > > when he does arrive home. He is so used to me napping that he comes in > > very > > > quietly so as not to wake me now, even though I’m not into an everyday > nap > > > these days. So I guess I’m thinking as I read over what I’ve typed here, > > > that this is very similar to what all the books tell us to do with our > > kids. > > > Be consistent, and try to plan with them what you expect of them in the > > > family. Our needs with MS are different, but the advice is the same. > Try > > > to expect the same things from them when you have good days and bad > > > days…that way it’s not such a big difference when you do have a flare. > > > Also, our MS society here had a weekend campout for the children of MS > > > parents. Ages 7-17. Nick didn’t go since it conflicted with other > plans > > > but I heard it was a very good weekend. Not only did it give the kids a > > > chance to do summer camping which in Florida is impossible for MSer’s > but > > > there were counselors there to provide a sounding block for those who > > > desired it. Maybe your local organization has something similar they > > offer > > > during the regular support meetings. > > > Hope this helps! > > > — > > > Cyberhugs, > > > DianeW > > > "jd" <kjdowl…@commspeed.net> wrote in message > > > news:1028393821.72760@news.commspeed.net… > > > > Hi Everyone, > > > > I need some advice. I have 2 girls, one 10yrs old and one 6yrs old. > My > > > > oldest is great about my MS, she understands that I am limited and > have > > my > > > > bad days. She rubs my neck and helps a bit around the house. As for > my > > 6 > > > > yr old, she pushes every button I have. She can’t seem to understand, > > nor > > > > do I expect her too, and when I am really down, she is really bad. I > am > > > > very open with the girls (but not too open), and the big problem with > my > > > > youngest last year was that she would talk about me in Kindergarten > > class > > > to > > > > the point that the teacher thought I was on my last leg. > > > > Do you have any advice? Know any books or videos that might help my > > > > youngest? I don’t want my MS to ruin her childhood!!! I am home full > > > time > > > > now (thanks to this monster), so my MS is alot more obvious. I have > > > always > > > > had a pretty good attitude about my MS, I just want my girls to have > the > > > > same. > > > > Thank you for any advice!!! > > > > Kami

Response:

When I was having trouble with Nick doing chores, we assigned a price to them. He got an allowance not for doing chores, but just for being. However, if he DIDN’T do his chores, he got his allowance "docked". At one point I remember charging him 25 cents each day I picked him up at school and his shoes were untied! That lasted until he owed me $2.00! And then he finally tied his shoes! Nick would get one dollar for each year, so if he was 5, he got five dollars, etc. He has always been motivated by money. As he got older, the chores are more costly. If he won’t vacuum and wash the car, and I have to take it to the car wash, he owes me whatever I had to pay to get it done. So it’s his choice, as long as it gets done. Hopefully getting the girls involved in the list making and a positive reward will help take the stress off of you. Good luck and let me know how it goes! — Cyberhugs, DianeW "jd" <kjdowl…@commspeed.net> wrote in message

news:1028417416.213011@news.commspeed.net… – Hide quoted text — Show quoted text -> Thank you Diane for the advice! It was great and I am going to try planning > better. I plan for myself by writing "to do" lists so I feel like I have > done something everyday (was once a work-aholic as a medical office manager > and always had a since that I was getting things done, that was a hard thing > to give up!!!). I have typed up cute "chore" lists for the girls with > little success. I will keep trying!! My husband is great and will try to > do everything after he gets home from work, that will eventually get old for > him I’m sure. > It is really nice to know that life can be somewhat normal in the face of > true adversity!!! Great advice!! > Smiles!! > Kami > DiWitt <DiW…@NOSPAMcfl.rr.com> wrote in message > news:8_Y29.205529$XH.4699920@twister.tampabay.rr.com… > > My son was about 10 when I was diagnosed with MS but I had already been > ill > > for 7 years with Rheumatoid Arthritis. He took it very well and was very > > understanding until this past year. He is almost 15 now and was very > > difficult last year. Of course, that’s partly the age I’m sure. I gave > him > > a booklet put out by the MS Society for teens on MS even though at 10 he > was > > preteen. It seemed to answer his questions the best. I had been thru > many > > other possible dx that were worse than MS in his opinion prior to my > > diagnosis. When they thought I had lupus, he asked "Are you going to > die?" > > I told him then, since sometimes lupus is fatal, "Well, we all are going > to > > die sometime and I don’t think my time is close yet." He asked the same > > question about MS. I explained the basics of it to him using the lamp > cord > > analogy and answered his questions as they come up. He asks his science > > teachers alot about MS they tell me. I think it makes them uncomfortable. > > He also has a friend whose mother has MS and they are a good source of > hand > > holding for each other. The hardest part is the ups and downs. When I > have > > a good spell, no one in the family adjusts too easily to the setback. It > > takes a while for them to remember that not all days are going to be as > good > > as the good days get. > > I rely on both my son and husband to pick up the slack of what I can’t do. > > I don’t want it to feel like I’m sloughing off my responsibilities on him, > > that as a child he is my caretaker so we do it by everyone having jobs > > according to their abilities. Everyone takes a turn cooking one night. > When > > we plan the weekly meals at dinner one night, Nick can choose what he > wants > > to cook. He makes great tacos and bacon and eggs. He learned how to cook > in > > boy scouts so that’s a plus. If you cook, you don’t have to do dishes here > > which is my son’s normal chore so he is glad to cook. Everyone has jobs > to > > do when we leave the house. Nick, preparing for his drivers license, is > > happy to be the one to start the car and cool it down for Mom. He will > also > > get a cooler with cool ties or ice packs and put it in the van before we > > leave. I can lock the inside doors and take care of the dog, etc. By > > emphasizing what I can do, I find that Nick feels better about what he is > > doing around here to help out rather than feeling like, Oh, I have to take > > care of Mom again. Sometimes we make lists of who has what to do > especially > > if its out of the ordinary like getting ready for Christmas or going on > > vacation. If your youngest can’t read yet, the two of you could paste > > pictures on note cards for her chores. By involving her in the process it > > might give her a better feeling about doing it…at least for a while > > anyway! I try to think of time/energy saving things also. For example, in > > the laundry room, I have the baskets labeled for sorting and everyone puts > > their own clothes there at the end of the day. It makes throwing a load > of > > laundry in easier when you don’t have to sort the colors first or run > around > > the house gathering it all up. Believe it or not, sorting laundry was a > big > > thrill for my son when I first started that up! Now, it’s habit for > > everyone. > > I also plan for down days. Monday is my down day. This was actually a > > suggestion of my neuro and really helped me. I stay in my jammies all day > > and am either on the couch or in the bed. Monday is carry out for food or > > someone else cooks. It allows me to recover from the weekend which is > > usually a busy and hectic time around the house with my driving him to > lots > > of functions. It also lets everyone else know that that’s Mom’s day off > and > > no one should plan anything for her to do. No car pool on Monday, no > got’s > > to haves at the last minute. Even my extended family and friends know now > > not to call or plan anything for Monday. By planning down time, its more > > predictable to my son and he is not caught off guard by it and not so > angry > > about Mom being unavailable. Monday is simply off limits. It’s kind of > like > > telling your kids that they have to go to bed in 15 minutes – they react > > better when you announce bedtime when they have had some preparation > first. > > This is especially true, the younger the child is. > > Not that everything is always smooth going here, but I found these things > > help in our house. Maybe you can find something in it that will help in > > yours. Look at your daily schedule and see how you can structure it so > that > > you can prep your youngest especially as much as possible. I always try > to > > take my nap before my son gets home from school so that I’m available to > him > > when he does arrive home. He is so used to me napping that he comes in > very > > quietly so as not to wake me now, even though I’m not into an everyday nap > > these days. So I guess I’m thinking as I read over what I’ve typed here, > > that this is very similar to what all the books tell us to do with our > kids. > > Be consistent, and try to plan with them what you expect of them in the > > family. Our needs with MS are different, but the advice is the same. Try > > to expect the same things from them when you have good days and bad > > days…that way it’s not such a big difference when you do have a flare. > > Also, our MS society here had a weekend campout for the children of MS > > parents. Ages 7-17. Nick didn’t go since it conflicted with other plans > > but I heard it was a very good weekend. Not only did it give the kids a > > chance to do summer camping which in Florida is impossible for MSer’s but > > there were counselors there to provide a sounding block for those who > > desired it. Maybe your local organization has something similar they > offer > > during the regular support meetings. > > Hope this helps! > > — > > Cyberhugs, > > DianeW > > "jd" <kjdowl…@commspeed.net> wrote in message > > news:1028393821.72760@news.commspeed.net… > > > Hi Everyone, > > > I need some advice. I have 2 girls, one 10yrs old and one 6yrs old. My > > > oldest is great about my MS, she understands that I am limited and have > my > > > bad days. She rubs my neck and helps a bit around the house. As for my > 6 > > > yr old, she pushes every button I have. She can’t seem to understand, > nor > > > do I expect her too, and when I am really down, she is really bad. I am > > > very open with the girls (but not too open), and the big problem with my > > > youngest last year was that she would talk about me in Kindergarten > class > > to > > > the point that the teacher thought I was on my last leg. > > > Do you have any advice? Know any books or videos that might help my > > > youngest? I don’t want my MS to ruin her childhood!!! I am home full > > time > > > now (thanks to this monster), so my MS is alot more obvious. I have > > always > > > had a pretty good attitude about my MS, I just want my girls to have the > > > same. > > > Thank you for any advice!!! > > > Kami

Response:

Thank you Diane for the advice! It was great and I am going to try planning better. I plan for myself by writing "to do" lists so I feel like I have done something everyday (was once a work-aholic as a medical office manager and always had a since that I was getting things done, that was a hard thing to give up!!!). I have typed up cute "chore" lists for the girls with little success. I will keep trying!! My husband is great and will try to do everything after he gets home from work, that will eventually get old for him I’m sure. It is really nice to know that life can be somewhat normal in the face of true adversity!!! Great advice!! Smiles!! Kami DiWitt <DiW…@NOSPAMcfl.rr.com> wrote in message

news:8_Y29.205529$XH.4699920@twister.tampabay.rr.com… – Hide quoted text — Show quoted text -> My son was about 10 when I was diagnosed with MS but I had already been ill > for 7 years with Rheumatoid Arthritis. He took it very well and was very > understanding until this past year. He is almost 15 now and was very > difficult last year. Of course, that’s partly the age I’m sure. I gave him > a booklet put out by the MS Society for teens on MS even though at 10 he was > preteen. It seemed to answer his questions the best. I had been thru many > other possible dx that were worse than MS in his opinion prior to my > diagnosis. When they thought I had lupus, he asked "Are you going to die?" > I told him then, since sometimes lupus is fatal, "Well, we all are going to > die sometime and I don’t think my time is close yet." He asked the same > question about MS. I explained the basics of it to him using the lamp cord > analogy and answered his questions as they come up. He asks his science > teachers alot about MS they tell me. I think it makes them uncomfortable. > He also has a friend whose mother has MS and they are a good source of hand > holding for each other. The hardest part is the ups and downs. When I have > a good spell, no one in the family adjusts too easily to the setback. It > takes a while for them to remember that not all days are going to be as good > as the good days get. > I rely on both my son and husband to pick up the slack of what I can’t do. > I don’t want it to feel like I’m sloughing off my responsibilities on him, > that as a child he is my caretaker so we do it by everyone having jobs > according to their abilities. Everyone takes a turn cooking one night. When > we plan the weekly meals at dinner one night, Nick can choose what he wants > to cook. He makes great tacos and bacon and eggs. He learned how to cook in > boy scouts so that’s a plus. If you cook, you don’t have to do dishes here > which is my son’s normal chore so he is glad to cook. Everyone has jobs to > do when we leave the house. Nick, preparing for his drivers license, is > happy to be the one to start the car and cool it down for Mom. He will also > get a cooler with cool ties or ice packs and put it in the van before we > leave. I can lock the inside doors and take care of the dog, etc. By > emphasizing what I can do, I find that Nick feels better about what he is > doing around here to help out rather than feeling like, Oh, I have to take > care of Mom again. Sometimes we make lists of who has what to do especially > if its out of the ordinary like getting ready for Christmas or going on > vacation. If your youngest can’t read yet, the two of you could paste > pictures on note cards for her chores. By involving her in the process it > might give her a better feeling about doing it…at least for a while > anyway! I try to think of time/energy saving things also. For example, in > the laundry room, I have the baskets labeled for sorting and everyone puts > their own clothes there at the end of the day. It makes throwing a load of > laundry in easier when you don’t have to sort the colors first or run around > the house gathering it all up. Believe it or not, sorting laundry was a big > thrill for my son when I first started that up! Now, it’s habit for > everyone. > I also plan for down days. Monday is my down day. This was actually a > suggestion of my neuro and really helped me. I stay in my jammies all day > and am either on the couch or in the bed. Monday is carry out for food or > someone else cooks. It allows me to recover from the weekend which is > usually a busy and hectic time around the house with my driving him to lots > of functions. It also lets everyone else know that that’s Mom’s day off and > no one should plan anything for her to do. No car pool on Monday, no got’s > to haves at the last minute. Even my extended family and friends know now > not to call or plan anything for Monday. By planning down time, its more > predictable to my son and he is not caught off guard by it and not so angry > about Mom being unavailable. Monday is simply off limits. It’s kind of like > telling your kids that they have to go to bed in 15 minutes – they react > better when you announce bedtime when they have had some preparation first. > This is especially true, the younger the child is. > Not that everything is always smooth going here, but I found these things > help in our house. Maybe you can find something in it that will help in > yours. Look at your daily schedule and see how you can structure it so that > you can prep your youngest especially as much as possible. I always try to > take my nap before my son gets home from school so that I’m available to him > when he does arrive home. He is so used to me napping that he comes in very > quietly so as not to wake me now, even though I’m not into an everyday nap > these days. So I guess I’m thinking as I read over what I’ve typed here, > that this is very similar to what all the books tell us to do with our kids. > Be consistent, and try to plan with them what you expect of them in the > family. Our needs with MS are different, but the advice is the same. Try > to expect the same things from them when you have good days and bad > days…that way it’s not such a big difference when you do have a flare. > Also, our MS society here had a weekend campout for the children of MS > parents. Ages 7-17. Nick didn’t go since it conflicted with other plans > but I heard it was a very good weekend. Not only did it give the kids a > chance to do summer camping which in Florida is impossible for MSer’s but > there were counselors there to provide a sounding block for those who > desired it. Maybe your local organization has something similar they offer > during the regular support meetings. > Hope this helps! > — > Cyberhugs, > DianeW > "jd" <kjdowl…@commspeed.net> wrote in message > news:1028393821.72760@news.commspeed.net… > > Hi Everyone, > > I need some advice. I have 2 girls, one 10yrs old and one 6yrs old. My > > oldest is great about my MS, she understands that I am limited and have my > > bad days. She rubs my neck and helps a bit around the house. As for my 6 > > yr old, she pushes every button I have. She can’t seem to understand, nor > > do I expect her too, and when I am really down, she is really bad. I am > > very open with the girls (but not too open), and the big problem with my > > youngest last year was that she would talk about me in Kindergarten class > to > > the point that the teacher thought I was on my last leg. > > Do you have any advice? Know any books or videos that might help my > > youngest? I don’t want my MS to ruin her childhood!!! I am home full > time > > now (thanks to this monster), so my MS is alot more obvious. I have > always > > had a pretty good attitude about my MS, I just want my girls to have the > > same. > > Thank you for any advice!!! > > Kami

Response:

Thank you Caroline, I will check out the website. I would have my oldest talk to her if I thought she would listen. At this point she just likes to fight with her older sister!! I tell them all the time that MS doesn’t kill you and they seem to understand that. Being a Mom is one of the hardest jobs in the world as far as I am concerned, but being a Mom with MS is, well, a true test of a mothers skills! Thanks so much for the advice!!! Smiles!! Kami Caroline Brodie <cbrodi…@earthlink.net> wrote in message

news:02V29.10734$nc.808181@newsread1.prod.itd.earthlink.net… – Hide quoted text — Show quoted text -> Check out the NMSS website. They have a publication called Smyelin (sp?). > It’s great for kids and helps you explain to them about MS. I think they > may have some publications that you can download as well. > Maybe your older daugher could have a talk with her? That might help. I > always make sure my two understand that mommy is not going to die, and that > I will always love them, no matter what. I think my oldest one, who was > about 6 when I was diagnosed, was so afraid I was going to die. She really > acted out quite a bit then. She’s great now though. And my 7 year old > pretty much has grown up with me having MS so he’s fine with it. > Hope this helps you! > jd <kjdowl…@commspeed.net> wrote in message > news:1028393821.72760@news.commspeed.net… > > Hi Everyone, > > I need some advice. I have 2 girls, one 10yrs old and one 6yrs old. My > > oldest is great about my MS, she understands that I am limited and have my > > bad days. She rubs my neck and helps a bit around the house. As for my 6 > > yr old, she pushes every button I have. She can’t seem to understand, nor > > do I expect her too, and when I am really down, she is really bad. I am > > very open with the girls (but not too open), and the big problem with my > > youngest last year was that she would talk about me in Kindergarten class > to > > the point that the teacher thought I was on my last leg. > > Do you have any advice? Know any books or videos that might help my > > youngest? I don’t want my MS to ruin her childhood!!! I am home full > time > > now (thanks to this monster), so my MS is alot more obvious. I have > always > > had a pretty good attitude about my MS, I just want my girls to have the > > same. > > Thank you for any advice!!! > > Kami

Response:

Thanks Julie, Sounds like we have alot in common, although I was dx’d 10 years ago after I had Dairean (my oldest). My youngest, Shaylor, also is very gifted (well they both are to me!!), although she seems to be more mad about my MS than sad!! Thank you for your post, I now know that I am not the only one dealing with this issue! I hope I can bounce stuff off you when the need arises. Smiles!!!! Kami jdgargoyle <jdanel…@uspower.net> wrote in message

news:aihg1u$13lip1$1@ID-85198.news.dfncis.de… – Hide quoted text — Show quoted text -> Kami > wow, deja vu! > I also have 2 daughters, now aged 9 and 13. > I was diagnosed when my MS turned progressive in may of 99, just after my > youngest finished kindergarten. > It knocked me out of the work force at an alarming speed, what seems like > overnight…..which I guess it was! I "retired" on std on April 30th 99 and > was diagnosed a month later….the friday before memorial day. I of course > did not know the retirement would be of a permanent nature…….but it > seems 4 years later it is. (miracles DO happen though so I do not loose hope > : ) ) > Unfortunately, her first grade teacher was not at all understanding about > the drastic change in Irissa’s(my youngests) life when first grade began. > Irissa would stop what she was doing in class and just break down in > tears…..when asked why it was because of her mommy. > The teacher(witch) accused Irissa of using her mothers illness to gain > attention. To this day I still cry thinking about it. > All I can say is that it is ok for them to cry, talk about it, worry, and > have the same feelings as the rest of us do. > I totally understand the push your buttons thing. Irissa is WAY to good at > that! : ) I call her my sunshine. Not because she is bright and cheerful > all of the time, she is that most of the time, but when she has > flares……..look out! : ) > What helped her was making a worry box. Everything she worried about, > (mostly me) and keeping it and adding things as needed. Once the worry was > in the box, she was told (by the school counselor) to let it go. > Not necessarily forget about it but realize that something has happened and > worrying about it will not fix it. > She than made a happy box, things that made her happy, and when the two were > compared she saw that she had many more things to be happy about and allot > fewer worries to be concerned about. > almost 4 years later……she is still using it! My irissa is a very > analytical, intelligent person who has always been way to smart > intellectually for her emotional age.(She took the 3rd grade reading/math > test for wisconsin and received 65 correct out of 66 total questions! I do > not need to see the final chart to know where she falls percentile wise!) > Of course after we had her figured out to adjust to a totally different life > style I realized that my eldest, Demetra, was NOT doing well at all with my > increasing decline. > Being the eldest, she felt she HAD to set an example for her sister and be > strong. This eventually, this past year, caused her some potentially major > health problems. > She gave herself a possible ulcer and IBS. > When talking to her about it, it turns out that the research she did for a > paper on MS was not all that positive. > She ran into many sites that dealt with levels of progression and came to > the conclusion I was dying. One old web site even stated MS was fatal, esp > if there are lesions on the brainstem, which I do have and she does know > about. > Demetra is also a talented and gifted student and it didn’t take her long to > make the possible hereditary connection having done research and having 2 > great aunts and several 2nd and 3rd cousins on both sides of the family that > have it. > Demetra and I are also practically twins, with the exception of eye color > and head circumference. > What helped me aid her was a very strange thing. We had a family eye > appointment at our opthamologist office and discovered that Demetra, Irissa > and Steve have almost the exact same size eyes. > When the opthamolagist discovered this he said it was very rare indeed. 2 > in one family may come close in regards to eye size but 3 is unheard of. > Both girls also have more of their fathers hazel blue/green eye color, > demetra’s are bright blue and irissa’s are a greener hazel than Steve’s (my > husband and their father) My eyes are dark brown…..so we throw that in > for good measure too! > Thinking about this, we came to a hypothesis that because the eyes are seen > on a fetus early in development and because the girls both have large heads, > 22 inches vs my 20 inch head, they inherited their fathers CNS (hopefully). > although there is no medical supporting studies or evidence to prove this > that I know of or our family dr knows of we still hang on to this as a > beacon of hope. > What I would be careful of is that your eldest may "seem" to have adjusted > better than your youngest, but in our case that just wasn’t true at all. > The youngest, second born, in our house is more boisterous and more of a > button pusher. She knows how to manipulate people to get what she wants. > Demetra on the other hand, plays the oldest to a tee. Always trying to set > a good example, patiently teaching someone who doesn’t always want to be > taught – esp. by her older sister, and being part of my emotional support > system. > This I find is a good/bad situation. She, demetra, is old enough to know > the consequences and possible outcome of health issues, and does worry about > getting the disease herself. > Demetra is also very good at seeing what needs to be done and just doing > it…….does not leave much time to be well, just a kid. > I do not want my illness to "take away their childhood" but we all freely > admit that it is inevitable that it does affect them. It does change their > lives and that is ok. > We make sure to discuss fears and have become even closer as a family than > we were before. > acceptance is very difficult for me. not acceptance of the disease but > acceptance of the fact I need help to do even some of the most basic things > now. > My girls and husband have done and continue to do a great job of supporting > me………but that doesn’t mean I like it! > I no longer wonder where my girls got their strength and > stubbornness….that is now completely obvious……..me! : ) > Take it one day at a time and remember…….the youngest always feels like > they are not allowed to do as much as the older sibling(s). > Being a second born out of 4 myself, I completely understand that level of > rebellion : ) > — > Take Care : ) > JulieD > "jd" <kjdowl…@commspeed.net> wrote in message > news:1028393821.72760@news.commspeed.net… > | Hi Everyone, > | > | I need some advice. I have 2 girls, one 10yrs old and one 6yrs old. My > | oldest is great about my MS, she understands that I am limited and have my > | bad days. She rubs my neck and helps a bit around the house. As for my 6 > | yr old, she pushes every button I have. She can’t seem to understand, nor > | do I expect her too, and when I am really down, she is really bad. I am > | very open with the girls (but not too open), and the big problem with my > | youngest last year was that she would talk about me in Kindergarten class > to > | the point that the teacher thought I was on my last leg. > | > | Do you have any advice? Know any books or videos that might help my > | youngest? I don’t want my MS to ruin her childhood!!! I am home full > time > | now (thanks to this monster), so my MS is alot more obvious. I have > always > | had a pretty good attitude about my MS, I just want my girls to have the > | same. > | > | Thank you for any advice!!! > | > | Kami > | > | > | > |

Response:

Kami feel free to contact me at anytime! Having relatively young children, and both having pistols for the youngest : ) I’m sure we have something to discuss! : ) I have no spam blocking in my email addy, but here is the addy anyway. jdanel…@uspower.net ps….cool initials for a display name : ) — Take Care : ) JulieD "jd" <kjdowl…@commspeed.net> wrote in message

news:1028413727.47603@news.commspeed.net… | Thanks Julie, | | Sounds like we have alot in common, although I was dx’d 10 years ago after I | had Dairean (my oldest). My youngest, Shaylor, also is very gifted (well | they both are to me!!), although she seems to be more mad about my MS than | sad!! | | Thank you for your post, I now know that I am not the only one dealing with | this issue! I hope I can bounce stuff off you when the need arises. | | Smiles!!!! | | Kami | jdgargoyle <jdanel…@uspower.net> wrote in message

Response:

My son was about 10 when I was diagnosed with MS but I had already been ill for 7 years with Rheumatoid Arthritis. He took it very well and was very understanding until this past year. He is almost 15 now and was very difficult last year. Of course, that’s partly the age I’m sure. I gave him a booklet put out by the MS Society for teens on MS even though at 10 he was preteen. It seemed to answer his questions the best. I had been thru many other possible dx that were worse than MS in his opinion prior to my diagnosis. When they thought I had lupus, he asked "Are you going to die?" I told him then, since sometimes lupus is fatal, "Well, we all are going to die sometime and I don’t think my time is close yet." He asked the same question about MS. I explained the basics of it to him using the lamp cord analogy and answered his questions as they come up. He asks his science teachers alot about MS they tell me. I think it makes them uncomfortable. He also has a friend whose mother has MS and they are a good source of hand holding for each other. The hardest part is the ups and downs. When I have a good spell, no one in the family adjusts too easily to the setback. It takes a while for them to remember that not all days are going to be as good as the good days get. I rely on both my son and husband to pick up the slack of what I can’t do. I don’t want it to feel like I’m sloughing off my responsibilities on him, that as a child he is my caretaker so we do it by everyone having jobs according to their abilities. Everyone takes a turn cooking one night. When we plan the weekly meals at dinner one night, Nick can choose what he wants to cook. He makes great tacos and bacon and eggs. He learned how to cook in boy scouts so that’s a plus. If you cook, you don’t have to do dishes here which is my son’s normal chore so he is glad to cook. Everyone has jobs to do when we leave the house. Nick, preparing for his drivers license, is happy to be the one to start the car and cool it down for Mom. He will also get a cooler with cool ties or ice packs and put it in the van before we leave. I can lock the inside doors and take care of the dog, etc. By emphasizing what I can do, I find that Nick feels better about what he is doing around here to help out rather than feeling like, Oh, I have to take care of Mom again. Sometimes we make lists of who has what to do especially if its out of the ordinary like getting ready for Christmas or going on vacation. If your youngest can’t read yet, the two of you could paste pictures on note cards for her chores. By involving her in the process it might give her a better feeling about doing it…at least for a while anyway! I try to think of time/energy saving things also. For example, in the laundry room, I have the baskets labeled for sorting and everyone puts their own clothes there at the end of the day. It makes throwing a load of laundry in easier when you don’t have to sort the colors first or run around the house gathering it all up. Believe it or not, sorting laundry was a big thrill for my son when I first started that up! Now, it’s habit for everyone. I also plan for down days. Monday is my down day. This was actually a suggestion of my neuro and really helped me. I stay in my jammies all day and am either on the couch or in the bed. Monday is carry out for food or someone else cooks. It allows me to recover from the weekend which is usually a busy and hectic time around the house with my driving him to lots of functions. It also lets everyone else know that that’s Mom’s day off and no one should plan anything for her to do. No car pool on Monday, no got’s to haves at the last minute. Even my extended family and friends know now not to call or plan anything for Monday. By planning down time, its more predictable to my son and he is not caught off guard by it and not so angry about Mom being unavailable. Monday is simply off limits. It’s kind of like telling your kids that they have to go to bed in 15 minutes – they react better when you announce bedtime when they have had some preparation first. This is especially true, the younger the child is. Not that everything is always smooth going here, but I found these things help in our house. Maybe you can find something in it that will help in yours. Look at your daily schedule and see how you can structure it so that you can prep your youngest especially as much as possible. I always try to take my nap before my son gets home from school so that I’m available to him when he does arrive home. He is so used to me napping that he comes in very quietly so as not to wake me now, even though I’m not into an everyday nap these days. So I guess I’m thinking as I read over what I’ve typed here, that this is very similar to what all the books tell us to do with our kids. Be consistent, and try to plan with them what you expect of them in the family. Our needs with MS are different, but the advice is the same. Try to expect the same things from them when you have good days and bad days…that way it’s not such a big difference when you do have a flare. Also, our MS society here had a weekend campout for the children of MS parents. Ages 7-17. Nick didn’t go since it conflicted with other plans but I heard it was a very good weekend. Not only did it give the kids a chance to do summer camping which in Florida is impossible for MSer’s but there were counselors there to provide a sounding block for those who desired it. Maybe your local organization has something similar they offer during the regular support meetings. Hope this helps! — Cyberhugs, DianeW "jd" <kjdowl…@commspeed.net> wrote in message

news:1028393821.72760@news.commspeed.net… – Hide quoted text — Show quoted text -> Hi Everyone, > I need some advice. I have 2 girls, one 10yrs old and one 6yrs old. My > oldest is great about my MS, she understands that I am limited and have my > bad days. She rubs my neck and helps a bit around the house. As for my 6 > yr old, she pushes every button I have. She can’t seem to understand, nor > do I expect her too, and when I am really down, she is really bad. I am > very open with the girls (but not too open), and the big problem with my > youngest last year was that she would talk about me in Kindergarten class to > the point that the teacher thought I was on my last leg. > Do you have any advice? Know any books or videos that might help my > youngest? I don’t want my MS to ruin her childhood!!! I am home full time > now (thanks to this monster), so my MS is alot more obvious. I have always > had a pretty good attitude about my MS, I just want my girls to have the > same. > Thank you for any advice!!! > Kami

Response:

Hi Everyone, I need some advice. I have 2 girls, one 10yrs old and one 6yrs old. My oldest is great about my MS, she understands that I am limited and have my bad days. She rubs my neck and helps a bit around the house. As for my 6 yr old, she pushes every button I have. She can’t seem to understand, nor do I expect her too, and when I am really down, she is really bad. I am very open with the girls (but not too open), and the big problem with my youngest last year was that she would talk about me in Kindergarten class to the point that the teacher thought I was on my last leg. Do you have any advice? Know any books or videos that might help my youngest? I don’t want my MS to ruin her childhood!!! I am home full time now (thanks to this monster), so my MS is alot more obvious. I have always had a pretty good attitude about my MS, I just want my girls to have the same. Thank you for any advice!!! Kami

Response:

Check out the NMSS website. They have a publication called Smyelin (sp?). It’s great for kids and helps you explain to them about MS. I think they may have some publications that you can download as well. Maybe your older daugher could have a talk with her? That might help. I always make sure my two understand that mommy is not going to die, and that I will always love them, no matter what. I think my oldest one, who was about 6 when I was diagnosed, was so afraid I was going to die. She really acted out quite a bit then. She’s great now though. And my 7 year old pretty much has grown up with me having MS so he’s fine with it. Hope this helps you! jd <kjdowl…@commspeed.net> wrote in message

Response:

Kami wow, deja vu! I also have 2 daughters, now aged 9 and 13. I was diagnosed when my MS turned progressive in may of 99, just after my youngest finished kindergarten. It knocked me out of the work force at an alarming speed, what seems like overnight…..which I guess it was! I "retired" on std on April 30th 99 and was diagnosed a month later….the friday before memorial day. I of course did not know the retirement would be of a permanent nature…….but it seems 4 years later it is. (miracles DO happen though so I do not loose hope : ) ) Unfortunately, her first grade teacher was not at all understanding about the drastic change in Irissa’s(my youngests) life when first grade began. Irissa would stop what she was doing in class and just break down in tears…..when asked why it was because of her mommy. The teacher(witch) accused Irissa of using her mothers illness to gain attention. To this day I still cry thinking about it. All I can say is that it is ok for them to cry, talk about it, worry, and have the same feelings as the rest of us do. I totally understand the push your buttons thing. Irissa is WAY to good at that! : ) I call her my sunshine. Not because she is bright and cheerful all of the time, she is that most of the time, but when she has flares……..look out! : ) What helped her was making a worry box. Everything she worried about, (mostly me) and keeping it and adding things as needed. Once the worry was in the box, she was told (by the school counselor) to let it go. Not necessarily forget about it but realize that something has happened and worrying about it will not fix it. She than made a happy box, things that made her happy, and when the two were compared she saw that she had many more things to be happy about and allot fewer worries to be concerned about. almost 4 years later……she is still using it! My irissa is a very analytical, intelligent person who has always been way to smart intellectually for her emotional age.(She took the 3rd grade reading/math test for wisconsin and received 65 correct out of 66 total questions! I do not need to see the final chart to know where she falls percentile wise!) Of course after we had her figured out to adjust to a totally different life style I realized that my eldest, Demetra, was NOT doing well at all with my increasing decline. Being the eldest, she felt she HAD to set an example for her sister and be strong. This eventually, this past year, caused her some potentially major health problems. She gave herself a possible ulcer and IBS. When talking to her about it, it turns out that the research she did for a paper on MS was not all that positive. She ran into many sites that dealt with levels of progression and came to the conclusion I was dying. One old web site even stated MS was fatal, esp if there are lesions on the brainstem, which I do have and she does know about. Demetra is also a talented and gifted student and it didn’t take her long to make the possible hereditary connection having done research and having 2 great aunts and several 2nd and 3rd cousins on both sides of the family that have it. Demetra and I are also practically twins, with the exception of eye color and head circumference. What helped me aid her was a very strange thing. We had a family eye appointment at our opthamologist office and discovered that Demetra, Irissa and Steve have almost the exact same size eyes. When the opthamolagist discovered this he said it was very rare indeed. 2 in one family may come close in regards to eye size but 3 is unheard of. Both girls also have more of their fathers hazel blue/green eye color, demetra’s are bright blue and irissa’s are a greener hazel than Steve’s (my husband and their father) My eyes are dark brown…..so we throw that in for good measure too! Thinking about this, we came to a hypothesis that because the eyes are seen on a fetus early in development and because the girls both have large heads, 22 inches vs my 20 inch head, they inherited their fathers CNS (hopefully). although there is no medical supporting studies or evidence to prove this that I know of or our family dr knows of we still hang on to this as a beacon of hope. What I would be careful of is that your eldest may "seem" to have adjusted better than your youngest, but in our case that just wasn’t true at all. The youngest, second born, in our house is more boisterous and more of a button pusher. She knows how to manipulate people to get what she wants. Demetra on the other hand, plays the oldest to a tee. Always trying to set a good example, patiently teaching someone who doesn’t always want to be taught – esp. by her older sister, and being part of my emotional support system. This I find is a good/bad situation. She, demetra, is old enough to know the consequences and possible outcome of health issues, and does worry about getting the disease herself. Demetra is also very good at seeing what needs to be done and just doing it…….does not leave much time to be well, just a kid. I do not want my illness to "take away their childhood" but we all freely admit that it is inevitable that it does affect them. It does change their lives and that is ok. We make sure to discuss fears and have become even closer as a family than we were before. acceptance is very difficult for me. not acceptance of the disease but acceptance of the fact I need help to do even some of the most basic things now. My girls and husband have done and continue to do a great job of supporting me………but that doesn’t mean I like it! I no longer wonder where my girls got their strength and stubbornness….that is now completely obvious……..me! : ) Take it one day at a time and remember…….the youngest always feels like they are not allowed to do as much as the older sibling(s). Being a second born out of 4 myself, I completely understand that level of rebellion : ) — Take Care : ) JulieD "jd" <kjdowl…@commspeed.net> wrote in message

news:1028393821.72760@news.commspeed.net… | Hi Everyone, | | I need some advice. I have 2 girls, one 10yrs old and one 6yrs old. My | oldest is great about my MS, she understands that I am limited and have my | bad days. She rubs my neck and helps a bit around the house. As for my 6 | yr old, she pushes every button I have. She can’t seem to understand, nor | do I expect her too, and when I am really down, she is really bad. I am | very open with the girls (but not too open), and the big problem with my | youngest last year was that she would talk about me in Kindergarten class to | the point that the teacher thought I was on my last leg. | | Do you have any advice? Know any books or videos that might help my | youngest? I don’t want my MS to ruin her childhood!!! I am home full time | now (thanks to this monster), so my MS is alot more obvious. I have always | had a pretty good attitude about my MS, I just want my girls to have the | same. | | Thank you for any advice!!! | | Kami | | | |

Response:

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Diagnosis confirmed

Question:

I agree! We’re usually up against the "it’s all in your head" thing. To have a dr. that is working in your best interest is great. Good luck! Dawn

Response:

Lee, I am so glad your Rheumy is being so good. It is nice to run into a Dr. that appreciates a patient that researches and becomes informed of their disease. It takes away alot of stress. Good luck with the MTX Cindy – Hide quoted text — Show quoted text -Lee Thompson-Herbert wrote: > So I went to the rheumatologist this morning. Yes, my hand and foot xrays > show signs of early rheumatoid arthritis. And the test for cryoglobulins > came back positive. So it’s definitely an autoimmune thing, and it’s > definitely real. The rheumatologist said this is the first time he’s been > happy to see positive test results. With a real diagnosis, he can easily > justify putting me on methotrexate, which he said I quite obviously need. > It’s still an overlap syndrome, since I have the UV sensitivity and skin > weirdness seen in lupus. But at least there’s some _real_ evidence on my > files now. It means I won’t have to fight to get a handicapped parking > permit and I’ll have an easier time if I decide to apply for disability. > On the flipside…just about everything I do is with my hands. I’m trying > to escape the "I’m SOOOOOO screwed!" feeling. Definitely was a good idea > to tell the dancers I wouldn’t be there tonight. Certain of them get short > tempered right before performances, and I’m stressed enough that I’d probably > start screaming back at them. > Oh, the rheumie has never had any of his patients do injected MTX. They > always pick the pills, apparently. So I get to wait 3-5 business days for > the pharmacy to order the injectable form. We’re starting out at 10mg and > ramping up to 15mg next month. The rheumie wants to stop the damage dead. > He figures after I’ve been on 15mg for a bit, we start trying to take down > my prednisone dose. He was thrilled that not only was I _willing_ to take > a "toxic" medicine like MTX, but that I was educated enough to know the > various risks and benefits. This apparently makes me *really* unusual for > his patient base. > — > Lee M.Thompson-Herbert l…@retro.com KoX 1995, SP4 > Head Muso, White Rats Morris > Member, Knights of Xenu (1995). Chaos Monger and Jill of All Trades. > "A head-on collision between Morticia Adams and Martha Stewart"

Response:

Knowing what is wrong – and that there *is* something you can do about it – is a *huge* step forward. Wishing you all the best, and happy you’ve got a good rheumy! "Lee Thompson-Herbert" <l…@gw.retro.com> wrote in message

news:abrvbe$bh1$1@gw.retro.com… – Hide quoted text — Show quoted text -> So I went to the rheumatologist this morning. Yes, my hand and foot xrays > show signs of early rheumatoid arthritis. And the test for cryoglobulins > came back positive. So it’s definitely an autoimmune thing, and it’s > definitely real. The rheumatologist said this is the first time he’s been > happy to see positive test results. With a real diagnosis, he can easily > justify putting me on methotrexate, which he said I quite obviously need. > It’s still an overlap syndrome, since I have the UV sensitivity and skin > weirdness seen in lupus. But at least there’s some _real_ evidence on my > files now. It means I won’t have to fight to get a handicapped parking > permit and I’ll have an easier time if I decide to apply for disability. > On the flipside…just about everything I do is with my hands. I’m trying > to escape the "I’m SOOOOOO screwed!" feeling. Definitely was a good idea > to tell the dancers I wouldn’t be there tonight. Certain of them get short > tempered right before performances, and I’m stressed enough that I’d probably > start screaming back at them. > Oh, the rheumie has never had any of his patients do injected MTX. They > always pick the pills, apparently. So I get to wait 3-5 business days for > the pharmacy to order the injectable form. We’re starting out at 10mg and > ramping up to 15mg next month. The rheumie wants to stop the damage dead. > He figures after I’ve been on 15mg for a bit, we start trying to take down > my prednisone dose. He was thrilled that not only was I _willing_ to take > a "toxic" medicine like MTX, but that I was educated enough to know the > various risks and benefits. This apparently makes me *really* unusual for > his patient base. > — > Lee M.Thompson-Herbert l…@retro.com KoX 1995, SP4 > Head Muso, White Rats Morris > Member, Knights of Xenu (1995). Chaos Monger and Jill of All Trades. > "A head-on collision between Morticia Adams and Martha Stewart"

Response:

So I went to the rheumatologist this morning. Yes, my hand and foot xrays show signs of early rheumatoid arthritis. And the test for cryoglobulins came back positive. So it’s definitely an autoimmune thing, and it’s definitely real. The rheumatologist said this is the first time he’s been happy to see positive test results. With a real diagnosis, he can easily justify putting me on methotrexate, which he said I quite obviously need. It’s still an overlap syndrome, since I have the UV sensitivity and skin weirdness seen in lupus. But at least there’s some _real_ evidence on my files now. It means I won’t have to fight to get a handicapped parking permit and I’ll have an easier time if I decide to apply for disability. On the flipside…just about everything I do is with my hands. I’m trying to escape the "I’m SOOOOOO screwed!" feeling. Definitely was a good idea to tell the dancers I wouldn’t be there tonight. Certain of them get short tempered right before performances, and I’m stressed enough that I’d probably start screaming back at them. Oh, the rheumie has never had any of his patients do injected MTX. They always pick the pills, apparently. So I get to wait 3-5 business days for the pharmacy to order the injectable form. We’re starting out at 10mg and ramping up to 15mg next month. The rheumie wants to stop the damage dead. He figures after I’ve been on 15mg for a bit, we start trying to take down my prednisone dose. He was thrilled that not only was I _willing_ to take a "toxic" medicine like MTX, but that I was educated enough to know the various risks and benefits. This apparently makes me *really* unusual for his patient base. — Lee M.Thompson-Herbert l…@retro.com KoX 1995, SP4 Head Muso, White Rats Morris Member, Knights of Xenu (1995). Chaos Monger and Jill of All Trades. "A head-on collision between Morticia Adams and Martha Stewart"

Response:

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