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
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 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:
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!
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