Question:

And if they mess up, quadruple that time. In my case I was being re-evaluated for SSI. The guy who interviewed me (admittedly I wasn’t well prepared) took less than a week to say I wasn’t qualified for it anymore. I asked for an extension of my benefits while they and I re-re-evaluated. To cut to the chase (besides him messing up and not even having my folder with him and getting basic facts wrong) I ended up in front of a judge over a year later. And I won. Had a nice lawyer too. Wasn’t anything like I pictured him when I first spoke to him on the phone, especially the earring. I wouldn’t have cared if he’d been tatooed from head to foot, as long as he knew his stuff. Which he did. And lots and lots of prayers of family and friends did it too. Nell "Aunt Judy" <auntj…@ladida.net> wrote in message

news:6DiN6.20$go4.15033369@news2.randori.com… – Hide quoted text — Show quoted text -> SSDI: How Long Do I Wait? > A news release from the Social Security Administration says the average wait for > a decision after filing for SSDI has stretched to > 104 days, which means the best you can do to hurry your claim along is to be > prepared and understand the process. Disabilities Guide > Gary Presley tells you how. > http://chronicfatigue.about.com/library/blroundabout.htm

Response:

I called too and I kept copies of all my records. I got a great book from the Lupus foundation that gave steps of what to do.  I wrote a detailed letter of all I had been though and how much I couldn’t do. I also sent all my x-rays and MRI and PFT’s and every  other things I had. I gave it to my DR and he had his secretary retype it and he sent it on his letterhead.(He had just wanted to call them.) The Lupus Foundation book says that you have to explain everything to the people who are reviewing your file in the simplest terms since they don’t understand about fibrosis and fatigue and stiffness and the like. I don’t think that people really understand how incapacitated we can get.(understatement) Gigi

Response:

SSDI: How Long Do I Wait? A news release from the Social Security Administration says the average wait for a decision after filing for SSDI has stretched to 104 days, which means the best you can do to hurry your claim along is to be prepared and understand the process. Disabilities Guide Gary Presley tells you how. http://chronicfatigue.about.com/library/blroundabout.htm

Response:

I got SSDI on the first try but it took 6 months. I might have gotten it sooner if they hadn’t made a mistake and somehow put it on a "hold" file. Gigi

Response:

I got mine on the first try too, but it took over a year and also would have gotten done months earlier if they hadn’t lost my entire file. When I didn’t hear anything after a few months, I called and discovered I had to start all over. They don’t apologize, either. I always advise everyone to keep lots of copies of everything. jude "GRamos3414" <gramos3…@aol.com> wrote in message

news:20010520163456.26717.00000438@ng-bj1.aol.com… – Hide quoted text — Show quoted text -> I got SSDI on the first try but it took 6 months. I might have gotten it sooner > if they hadn’t made a mistake and somehow put it on a "hold" file. > Gigi

Response:

Gee! When I filed for SSDI my waiting period was 120 days and it took all of that, maybe it is different in different states. At any rate I received it after the 2nd attempt. I just love the way they let you know when they deposited the money either in your checking or savings account. Aunt Judy <auntj…@ladida.net> wrote in message

news:6DiN6.20$go4.15033369@news2.randori.com… – Hide quoted text — Show quoted text -> SSDI: How Long Do I Wait? > A news release from the Social Security Administration says the average wait for > a decision after filing for SSDI has stretched to > 104 days, which means the best you can do to hurry your claim along is to be > prepared and understand the process. Disabilities Guide > Gary Presley tells you how. > http://chronicfatigue.about.com/library/blroundabout.htm

Response:

Question:

Vicious newsgroups. … Well, this is the only one I post to and I have read others.  I read them and found that they were not what I had thought them to be, so I left as quietly as I came in.   As to tearing apart the newbies, well, that is wrong, and that is when we let our emotions get the best of us and loose focus on what our goals are.  For that, I do apolgize. I do feel that it is up to the people that have been around for a while to help facilitate, and also keep the goals alive in the newsgroup.  That is just a product of being one of the old timers.  LOL   As to the thread of sherry, well, that is a difficult one.  The goal here is to print the truth and not have it twisted.  The emotions run high as many have been hurt.  Those emotions carry over and hurt those that it is meant to help protect and understand one of the dangers on the internet.  As we discover more dangers, they should be exposed and the truth should also be told. One of the reasons I have visited newsgroups is because they often allow me to sift through the crap and make decisions based on my own understanding. The thing I don’t like is the advertizing and the smut crap that seem to appear from time to time.  This seems worse on Teen support groups and teen chats.  I guess they try and hurt them when they are younger.  That is the downfall of a non-monitored newsgroup.  But, if I was not there, I would not have known and perhaps would have let our younger visitors use a screen name without blocking these groups from them for access. As to Barbara, I hope that I have not spoken ill toward you.  your efforts to maintain neutral are quite well focused.  Just this one thread is one that many of us need to be able to vent and share, and help others see the danger.  Then the healing can begin. Take care, Don and Brandy the wonderdog ;-)

Response:

Sharon,  My tears have turned to big wide grins. Thank you!  Barbara.

Response:

test post newbie

Response:

Ya got MY reethpekt, that’th for shore! –Jaimeth – Hide quoted text — Show quoted text -Barbara Reutercrona wrote: > While I have not posted on newsgroups other than this one, I do post on > message boards. When I have tried to be a sort of mediator to a current > controversial topic, I have found myself being attacked by what I refer to > as a form of cultism. If you are fairly new to the board and make any waves, > the original members tend to tear you apart piece by piece. I have, believe > it or not, resorted to tears because my feelings were destroyed by people > that I do not know, nor do they know me. They succeeded in what perhaps was > their end goal. I no longer post on those boards. Can you imagine being this > sensitive at the ripe old age of  68? I am working on this problem and have > come here to this newsgroup because I like your honesty and now that I have > confessed my age, I expect respect. LOL!!!!! ………B.R………..

Response:

>Most of the time it is only one or two who have nothing better to do than to >try and cause problems.  I have no problems with discussions.  I do, >however, take offense when someone posts nasties to the discussion trying to >cause a flame war.  And, unfortunately, when my temper gets flares, they >have accomplished what they want because then I become involved.  I am >taking some time to reflect and see what I can do to calm myself and stop >this response.  If I don’t, then I don’t think and that can cause big >problems. >What about the rest of you?  What is your first reaction and what do you try >to do to avoid getting involved?  I really would like to hear what others >have to say about this.  HUGS~ Jenn/NC

If worse comes to worse, a particular troublemaker can be filtered out so their postings don’t show. Most every NG browser has such an option. Sort of what you don’t know won’t hurt you. On alt.snail we have regulars that post all the time. It’s a matter of getting to know these people over a period of time. When first subscribing to a NG, it’s best to lurk for a while to ascertain the general tone of the group. I guarantee that a newcomer who comes on like Gangbusters at the beginning will get flamed but plenty. Since most news groups are not moderated, the subscribers who want good quality will govern the news group. There is peer pressure and a heirarchy in every phase of life including news groups. For the most part you can simply ignore trollers and eventually they go away. To avoid having anything related to a news group leak into your email, you can put up a bogus email addy. IE ^^^^@###.$$$ That way, any personal response will not be sent to your real email address since it’s the bogus address that’s being responded to. This is perfectly legal to do, as my own ISP recommended doing this to avoid spam and abusive email replies. Also, if there is a poster who’s abusive or flooding the news group with garbage, you can complain to abuse@ whatever ISP is being used. Most news group browsers will allow you to view header information and any complaint to ‘abuse’ should have this info pasted at the top of the complaint message. There’s all kinds of numbers and routing info that the ISP will be able to use to track down the offending party. Depending on the severity and frequency of the offending material, a newsgroup user might get a warning from the ISP or at the extreme be shut off. This is rare, but can happen. A news group is what one or more than one makes it. If lots of people are active, then there’s lots of threads and postings. If no one is active, then it will be a ‘nothing day’ with no postings at all. Since this topic seems to be of interest to many, I see a lot of activity. BOB

Response:

Barbara, How wonderful Grays Harbor is with the laid back life style.  I love it when we get a chance to go out that way.  There are a number of craft stores my wife loves to stop and visit ( hahaha and load up the car while we are there ). We live over in Port Orchard and anytime you are over this way, we will brew up a pot of my favorite blend of beans and have a chat.   Thank you for your kind reply. Take care, Don and Brandy

Response:

Barbara, You know we all love you because you’re lovable (and we were taught to respect our elders, LOL).  Do stay in touch.  I enjoy our "private" little chats. Sharon Andrews "Barbara Reutercrona" <bah…@techline.com> wrote in message

news:tf5rrrp1n5hnbb@corp.supernews.com… – Hide quoted text — Show quoted text -> While I have not posted on newsgroups other than this one, I do post on > message boards. When I have tried to be a sort of mediator to a current > controversial topic, I have found myself being attacked by what I refer to > as a form of cultism. If you are fairly new to the board and make any waves, > the original members tend to tear you apart piece by piece. I have, believe > it or not, resorted to tears because my feelings were destroyed by people > that I do not know, nor do they know me. They succeeded in what perhaps was > their end goal. I no longer post on those boards. Can you imagine being this > sensitive at the ripe old age of  68? I am working on this problem and have > come here to this newsgroup because I like your honesty and now that I have > confessed my age, I expect respect. LOL!!!!! ………B.R………..

Response:

There is one diet ng that I monitor and where I used to post. It always annoyed the heck out of me that there was always someone who would be sure to post the opposite to everyone else. If someone said that eating 100 candy bars made them gain weight someone would always pop up with "Well, it’s not that way for me" Whack! Right in the head with a wet noodle! For almost a year I posted on a group that was torn apart by trolls. It got so bad the members turned on each other in their frenzy. So sad. I used to have a good time there. Jo

Response:

On Fri, 04 May 2001 15:02:35 GMT, "Amelia Yaussy" <ayau…@forcemail.com> wrote: >Bob, you’ve inspired me to a new thread.  I’d like to hear more of others’ >experiences with truly nasty posting on newsgroups.  I have a friend in the >chess world who gets regularly dragged through the coals on one of their >n/gs.  They’ve called him everything but a man! >I’ve also seen some major attacks on other support n/gs, which seems to be >against the spirit of the whole idea of support, except that there is a real >fear of newbies being taken advantage of, and I gather the expereinced users >are really just trying to be protective.  Good in some ways – I remember >having my feelings hurt a few times early on when I didn’t understand the >"game."

I subscribe to a group called alt.snail-mail. It’s what you can call a combination of a family and a soap opera. Depending on the weather, the time of the year, or the tone of a given thread, there is a definite general mood. There are times we’re all lovey dovey and the next moment it’s out and out hostile. What makes it this way is not so much the content of a posting as it is the way it’s presented. Needless to say, the USPS leaves a lot to be desired as far as giving optimal service. However, let a poster come in out of the blue and make a derogatory remark about postal workers as being lazy, under worked, and overpaid and let a letter carrier read it after working eight hours in a 30 degree below zero windchill factor. You’ll see how many nasty postings will show that night. I assure you that I’ve gone ballistic at times. One moment we might argue or tell jokes, but when there is a common factor such as the weather or a comment about a postal worker’s effort brought up, it’s amazing how ‘rivals’ turn into allies. I’ve seen mass attacks done on people who are abusive. While I more than likely will not put a face to those I’ve ‘known’ for years (I do know one personally and lovingly), there’s not a moment that I don’t wonder ‘wuzzzzzzZuppp?’ with the gang. It’s not good to take things personally when at a news group. However, this is easier said than done. I enjoy this news group and feel very much akin to the ‘regulars’. I’m surprised as to how well behaved this group generally is. Even though this week was a tad ‘heated’, I wouldn’t call it being badly behaved. I’ve seen some REAL bad stuff posted elsewhere. Believe it or not, I have a split personality. While I hold my ‘tongue’ here, I’m not so prone to do so at alt.snail. Like most everyone else there, I’ve used language that would make Popeye blush. I won’t here, because this is a group of people who have a 24 / 7 illness as opposed to matters concerning that which is professional. There are various standards and factors, written and unwritten that news group posters should follow. I guess it’s do as the Romans do. BOB C|8-{ "Assassins!"- Arturo Toscanini to his orchestra

Response:

Bob, you’ve inspired me to a new thread.  I’d like to hear more of others’ experiences with truly nasty posting on newsgroups.  I have a friend in the chess world who gets regularly dragged through the coals on one of their n/gs.  They’ve called him everything but a man! I’ve also seen some major attacks on other support n/gs, which seems to be against the spirit of the whole idea of support, except that there is a real fear of newbies being taken advantage of, and I gather the expereinced users are really just trying to be protective.  Good in some ways – I remember having my feelings hurt a few times early on when I didn’t understand the "game." — Amie ——- Misfortune comes from having a body. Without a body, how could there be misfortune? –Tao Te Ching

Response:

I read a NG about child support, but haven’t posted yet.  This one looks like a man against woman NG and the men (and sometimes women) can get really nasty towards the opposite sex.  At first, all I saw were men posting nasties about women, but then towards the bottom I saw women post.  I was going to unsub if it were all men, lol, as I could tell they had serious problems with women.  :) I have seen flames wars start over and over again.  The main reason that the Lupus Foundation took down their message boards was because the FBI told them they could be held liable for the flaming and harassing of others if they didn’t do something to try to prevent it.  Instead of doing that, they decided to just close the message boards.  I am one of only a couple who know this, as I have seen the documents and emails and know the circumstances involved. Most of the time it is only one or two who have nothing better to do than to try and cause problems.  I have no problems with discussions.  I do, however, take offense when someone posts nasties to the discussion trying to cause a flame war.  And, unfortunately, when my temper gets flares, they have accomplished what they want because then I become involved.  I am taking some time to reflect and see what I can do to calm myself and stop this response.  If I don’t, then I don’t think and that can cause big problems. What about the rest of you?  What is your first reaction and what do you try to do to avoid getting involved?  I really would like to hear what others have to say about this.  HUGS~ Jenn/NC "Amelia Yaussy" <ayau…@forcemail.com> wrote in message

news:fwzI6.134514$BB5.1638476@typhoon.columbus.rr.com… – Hide quoted text — Show quoted text -> Bob, you’ve inspired me to a new thread.  I’d like to hear more of others’ > experiences with truly nasty posting on newsgroups.  I have a friend in the > chess world who gets regularly dragged through the coals on one of their > n/gs.  They’ve called him everything but a man! > I’ve also seen some major attacks on other support n/gs, which seems to be > against the spirit of the whole idea of support, except that there is a real > fear of newbies being taken advantage of, and I gather the expereinced users > are really just trying to be protective.  Good in some ways – I remember > having my feelings hurt a few times early on when I didn’t understand the > "game." > — > Amie > ——- > Misfortune comes from having a body. > Without a body, how could there be misfortune? > –Tao Te Ching

Response:

Jaimeth, You are thoe thweet!!……….."B"……….

Response:

Barbara Reutercrona wrote: > While I have not posted on newsgroups other than this one, I do post on message boards. When I have tried to be a sort of mediator to a current controversial topic, I have found myself being attacked by what I refer to as a form of cultism.>>>

I know what you mean, Barbara. I tried to make the fighting stop on a ng, and was reminded that just by posting that comment that I was now embroiled in the controversy. Ya can’t win! >>Can you imagine being this sensitive at the ripe old age of  68?

………B.R………..>> Barbara, I’m not that far behind you, 61, and my feelings get hurt, too. "Stick and stones" doesn’t work, the name calling hurts! Jo

Response:

Don, This is to let you know that you have never, ever, not once, made any remark, be it directly or indirectly to hurt my feelings. My skin is getting as tough as rawhide now and if you misbehave I will just get in my car and drive for an hour and a half to where you live and look you straight in the eye, (mine of course will be filled with tears) and have you apologize!!……..You do live in Washington State, right? If you are wondering, I live in the Grays Harbor area.  Have a great weekend. B.R.

Response:

While I have not posted on newsgroups other than this one, I do post on message boards. When I have tried to be a sort of mediator to a current controversial topic, I have found myself being attacked by what I refer to as a form of cultism. If you are fairly new to the board and make any waves, the original members tend to tear you apart piece by piece. I have, believe it or not, resorted to tears because my feelings were destroyed by people that I do not know, nor do they know me. They succeeded in what perhaps was their end goal. I no longer post on those boards. Can you imagine being this sensitive at the ripe old age of  68? I am working on this problem and have come here to this newsgroup because I like your honesty and now that I have confessed my age, I expect respect. LOL!!!!! ………B.R………..

Response:

Question:

Hi again! Has anyone with M.S. been diagnosed with Lupus specifically? Diana

Response:

Hi Diana! There is the Multiple Autoimmune Genetics Consortium, a group of US researchers looking to define the genetic basis of autoimmune diseases by studying families which have multiple members dx’ed w/autoimmune diseases. Do you have MS & lupus? They can be reached by calling 1-800-382-4827 or contacting them on the web at NA…@NSHS.edu         Jayne

Response:

Hi Diana, The International MS Support Foundation, at http://PEACH.EASE.LSOFT.COM/archives/AUTO-IMMUNE.html has a searchable database on autoimmune diseases… In article <AvPA6.241009$tP3.3751…@news1.rdc1.bc.home.com>,  "Diana Calder" <d.r.calder@home> wrote: > Hi again! > Has anyone with M.S. been diagnosed with Lupus specifically? > Diana

– Take Care James (#11)

Response:

Thanks James! This is a very informative site! Diana jbridges <jbridg…@home.com> wrote in message

news:jbridges1-E6FA63.13271311042001@news1.gvcl1.bc.home.com… – Hide quoted text — Show quoted text -> Hi Diana, > The International MS Support Foundation, at > http://PEACH.EASE.LSOFT.COM/archives/AUTO-IMMUNE.html > has a searchable database on autoimmune diseases… > In article <AvPA6.241009$tP3.3751…@news1.rdc1.bc.home.com>, >  "Diana Calder" <d.r.calder@home> wrote: > > Hi again! > > Has anyone with M.S. been diagnosed with Lupus specifically? > > Diana > — > Take Care > James (#11)

Response:

Question:

Dear all, I live in the south of the Netherlands and I am deeply impressed by the lack of integrative knowledge on auto-immune diseases by medical doctors. Does anyone know the name and preferably also the address of a medical doctor on this kind of diseases. It would be wonderfull if it was in the Netherlands or Belgium. kind regards, Hilde Paul

Response:

In article <3A6F490F.B856…@wxs.nl>, Hilde Paul <hilde.p…@wxs.nl> wrote >Dear all, >I live in the south of the Netherlands and I am deeply impressed by the >lack of integrative knowledge on auto-immune diseases by medical >doctors. Does anyone know the name and preferably also the address of a >medical doctor on this kind of diseases. It would be wonderfull if it >was in the Netherlands or Belgium. >kind regards, Hilde Paul

Go to www.elef.rheumanet.org which is the European Lupus Foundation and look under the country of your choice for the national organisation. They should know. There are many experts in Europe! — Andy For Austrian philately <URL: http://www.kitzbuhel.demon.co.uk/austamps/> For Lupus <URL: http://www.kitzbuhel.demon.co.uk/lupus/> For my other interests <URL: http://www.kitzbuhel.demon.co.uk/>

Response:

Question:

Does anyone know any good sites for a)  hair loss  and b) drug interaction (prescription and OTC) ?

Response:

don’t know about hair loss sites, but would be interested in information about that as well. However I did find this website…I don’t know how good or reliable it is, but you might want to give it a try: www.drugchecker.com good luck. take care, julia "lupus baby" <vlup…@webtv.net> wrote in message

news:24382-3A5F321F-25@storefull-244.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -> Does anyone know any good sites for a)  hair loss  and b) drug > interaction (prescription and OTC) ?

Response:

http://home.earthlink.net/~codern2/ *************************************************** Just my opinion. Tina (my site under construction)

Response:

Hair loss sites…. I have not gone into yet, but the Lupus Foundation gave them to me. www.aad.org/addpamphrework/hairloss.html www.members.aol.com/hairbook If you get there first, let me know about them.

Response:

Question:

Janers: You go girl!!!  How far are you walking?  I would like to see you on those roller blades however!!!!  It is definitely a worthy cause. Jeannette

Response:

Sorry I for got to add my name to the post…about Lupus Walk an Roll A Thon… — Janers "Somedays are diamonds, Somedays are stones" Somedays this pain won’t leave me the hell alone"

Response:

Hi gang,  just thought I would invite you all to the Walk an Roll A Thon in Findlay Ohio on October 7th, 2000.

Janers it sounds very fun! What a great fund rasing idea! ~Krissy See my pond: http://members.aol.com/KrissyJo/ponds.html Akron, Ohio http://arthritisinsight.com Knowledge is power…support is essential.

Response:

Hi gang,  just thought I would invite you all to the Walk an Roll A Thon in Findlay Ohio on October 7th, 2000. Now I know this is a long way off, but the Northwest Chapter of Ohio is getting in high gear for this. "GET IN THE LOOP"    is the name of the new campaign for Lupus Foundation…..There are new ORANGE PINS OUT TO PROMOTE AWARENESS…… I am a gonna try and walk, roller blades would kill me.  LOL You don’t have to walk any specified distance just collect money, pledges and bring it in.  There is prizes and food and what ever going on that day. Will be fun.  I am getting out brochures and If I had a scanner I would send it to you. Want informtion email me….. I even getting 2 jars ready with the ok of the National Group, and these jars are going in the carry out restraurant my brothers own.  And another in my niece’s carry out.  (YOU THINK THE PEOPLE WHO BUY BEER WILL SOONER OR LATER DROP SOME MONEY IN THERE LOL)        any how.  I am raising money for a very worthy cause and help to all who have Lupus.   I feel good about this and wanted to share with you… Remember Oct 7th in Findlay Ohio…..

Response:

Question:

Just wanted to add a note to KCat’s excellent reply.   << dsDNA is relatively specific (i know, oxymoron) for SLE but that doesn’t mean that all people *with* SLE have it.  And it’s possible to wax and wane on antibodies quite easily.>> That’s true.  In fact, dsDNA goes up and down quite a bit in accordance with the lupus waxing and waning.  Therefore, it’s not surprising that one dsDNA might be less than 3 while another was 21.   <<RNP is often positive in scleroderma as is one of the SS’s but I can’t recall which off hand. >> A positive anti-RNP is necessary for a MCTD diagnosis.  It’s not uncommon to have positive anti-SSA along with that. As for Sjogren’s, primary Sjogrens will generally have a positive anti-SSB and secondary Sjogrens anti-SSA.  It’s also possible to have both at the same time. Sandra

Response:

Sherry~~~Hi! I’m Kim. Have sle with cerebritis.  I know how hard it is when faced with the battle of the lab reports. I was nodding all the way through KCat’s post.  I’m one whose labs were so out of whack that it was not difficult to diagnose the sle, but I have heard of hundreds of others that it takes months to nail it down.  Be patient, have faith, and if you feel you need a second opinion, the get it.  Keep us posted here, if nothing else so we can keep each other going!!!!  Kim * Sent from AltaVista http://www.altavista.com Where you can also find related Web Pages, Images, Audios, Videos, News, and Shopping.  Smart is Beautiful

Response:

BTW, you might want to have that anti-dsDNA level retested at some point, such as when you’re flaring.  Anti-dsDNA is highly specific for lupus.  It has at least a 95% specificity for it in fact.  That means, there’s virtually nothing but lupus which would cause a positive anti-dsDNA.  Still, some doctors will question a positive low titer anti-dsDNA as possibly being a false positive. It helps to have a second positive result to confirm the first one.   By contrast, ANA is not very specific for lupus.  Even though about 95% of people with lupus will have a positive ANA at some point in their illness, ANA’s can be positive for a wide variety of autoimmune diseases, and even positive in a few normal individuals.   The reason for this is that when you have a test with low sensitivity and/or low specificity, you will get a lot of positive results, especially false positives.  This makes the ANA useful as a screening test though for lupus because very, very few people with lupus at the time of diagnosis will test negative for ANA.  Therefore, a negative ANA makes a lupus diagnosis much less likely.  On the other hand, because of the high incidence of false positives, doctors will often look for substantial titers to be sure that the positive wasn’t a false one.  That doesn’t mean that a 1:80 titer is a false positive. It just makes it more uncertain. On the other hand, when you have a very sensitive, highly specific test such as the anti-dsDNA, then you’re much less likely to get false positives.  You’re also not going to see nearly as many positive results.  In fact, anti-dsDNA is only positive in about half of the people with lupus.  This makes anti-dsDNA not very useful for screening purposes which is why it’s not automatically run for everyone suspected of having it.  In fact, it’s usually only ordered after a symptomatic individual has a positive ANA.  Anyway, because this test is so specific and so sensitive, it has a very high level of reliability for diagnosing lupus.  As I mentioned above, with a low titer, some doctors may still think there could possibly be a false positive.  Repeating the positive result should really eliminate any doubt though…especially if that test is done at a good lab by ELISA.   If you’d like to know more, I suggest you get Dr. Wallace’s THE LUPUS BOOK, revised ed.  It’s really the best resource book out there for lay people and really goes into a lot of detail on ANA and anti-dsDNA as well as many other topics about lupus.  It’s endorsed by the Lupus Foundation and not expensive. You can get it at most major booksellers as well as from the Lupus Foundation. Sandra

Response:

On Sat, 1 Jul 2000 23:54:23 -0700, "Sherry" <sstof…@inreach.com> wrote: >KC, I don’t see anything on the report that says ESR other than in the >notation" I posted. >As for the WBC I have not felt ill..

The high count may just be "incidental" and not related to the other symptoms.  Of course, that may be hard to convince a doctor about. The other symptoms could be interpreted as "ill" from infection. It is possible to have infections such as CMV (cytomegalovirus), Epstein-Barr virus, and of course the infamous Lyme Disease, and not have any of the symptoms one typically associates with viruses (head congestion, nausea, drainage, etc.)  Your counts are quite high, not just a little high so it’s highly possible that you will be told you may have some sort of unwanted resident. If that is the case, then you should, IMO, request proper testing for such infections.   Either way, it is possible that there is no connection at all or that you are of the small number of autoimmune patients that have abnormally high wbc counts.  So don’t take my comments as dismissing your symptoms or anything.  I feel that some of your symptoms are so "common" for SLE (mouth/nose sores, low grade temp, migraines, rash, photosensitivity) that you may in fact be dealing with this disease.   Whatever the *cause* of your symptoms, you are coping with the same issues other here are coping with.  I don’t have a dx either and I have iffy lab results – my ANA has been as high as 1:640 but last time was down to 1:160  and my dsDNA is nil. – but I consider myself a lupie based on the big picture as you describe it.  The overwhelming similarity in my constellation of symptoms to SLE.  And since I am being treated as such then it doesn’t make sense for me to argue the point with my doctors (though I often want to <g>).  So… that said I think one of the most important things is that your doctor take the whole picture into mind and if he/she says "your wbc’s are up, you just have an infection" you should grill him/her about the other symptoms.  My docs would explain away the photosensitivity (some people just have that), Raynaud’s (well, your feet are just cold – besides, Raynaud’s is only in the hands (untrue)), fevers (99.5 isn’t a fever – yeah, tell that to my aching, sweating body), etc. So I do know what you are going through and how aggravating all this is. I hope you will write me any time you need to vent. Take care, KCat

Response:

KC, I don’t see anything on the report that says ESR other than in the notation" I posted. As for the WBC I have not felt ill…I have of course the pain in the joints, muscles, and ? and have tingly,pricking sensations on various parts of my body, my brain is fogged most of the time, have run a low grade temp for as long as I can remember, I have the severe migraines and have them way too frequently, the sores in my mouth and nose and the list goes on and on and on and of course the beautiful Lupus marks and severe sensitivity to the sun and florecent lights. Thanks for your ans. on the tests as I tried to look up what they were and what the absolutes meant and all and just wasn’t getting it. Reference range on the WBC 15.6 (H)  thous/mcl    3.8-10.8 Absoulute Neutrophils 14227 (H)  cells/mcl     1500-7800 Absolute Eosinophils 0 (L)    cells/mcl         50-550 the Sm, RNP, SSA & SSB all show .91-1.09 =Equivocal Sorry I should have put all of that the first time as I forgot all labs don’t use the same #’s Take care, Sherry "KCat" <kcdoc…@ghg.net> wrote in message

news:h87tlschj1jglrm4qhkc31ka2qeqhkjqeo@4ax.com… – Hide quoted text — Show quoted text -> I am reposting this under it’s own header so it doesn’t get lost in my > thread. > >Got a copy of the lab report from my PCP day before > >yesterday but I of course can’t interpret it.  WBC 15.6 (H),  Absoulute > >Neutrohils 14227(H), Absolute eosinophils L, > It would be helpful to know the reference ranges for these tests, > however, in general it can be said that high wbc’s indicate possible > infection, including neutrophils which serve a very specific function > in fighting pathogens (but don’t ask me what it is until I can dig up > my books).  It isn’t a *guarantee* that you have an infection but a > lot of times when high wbcs are seen, that will be a doctors > supposition.  Generally lupies tend to have low wbc counts but of > course, not always. > Eos are wbcs that are largely responsible for mediating allergic > responses.  Having them low is not a big deal but it *does* affect > your total wbc count.  I am a walking allergen.  I always have very > high eos.  This just means my system is primed to react to various > things that I am allergic to (peanuts, onion, mold, ragweed…ad > infinitum). > >ANA Pattern   Nucleolar, > >Antinuclear Antibodies 1:80 (H), > You ANA is listed as "high" but it is just *barely* above what is > considered negative.  They have only had to dilute it twice.  1:40 is > normal or negative, 1:80 is positive.  Typically, 1:640 or greater is > considered significant.  That is a total of 5 dilutions. > The Nucleolar patter means that the stain for the ANAs was taken up > into the neclueoli of the cell.  This is generally seen in Lupus but > patterns are only help in diagnosing, they are not highly specific. > Typically, a person who has a false positive ANA titre will who the > diffuse pattern I believe.  To double check this info, you might go to > the Hamline website and look in the "Articles" for "Lab tests used to > diagnose…"  they have a good explanation for which pattern is common > in which condition. > >Rheumatoid Factor <20, DNA antibodies > >native <3 (prior test showed 21), > >SM Antibody <.91, RNP Antibody <.91, SSA<.91, SSB, <.91. > well, all these are in normal range but that does not mean you don’t > have a problem.  dsDNA is relatively specific (i know, oxymoron) for > SLE but that doesn’t mean that all people *with* SLE have it.  And > it’s possible to wax and wane on antibodies quite easily. > RNP is often positive in scleroderma as is one of the SS’s but I can’t > recall which off hand.    the other SS is often positive in Sjogrens. > I don’t see the ESR value or is this note below saying that the sample > was not available? > >With a note on the > >report that states ESRSpecimens are stable for 4-6 hrs. at room temp, 12 hrs > >refridged. ESR results trend lower with increased specimen age.  Lab drew > >blood and I provided urine at 2:50 PM on Thur the 15th…samples sent to the > >Bay area and the report date is Mon 19th 10:41.  Not sure if any of that > >info is important. > >Pretty bad when the bill for the Doc and the Lab get to you before you even > >have a clue to the Docs answer.  I am about ready to scream..got any idea > >what the results mean? > I hope this helped a little.  I’m sorry I can’t be more precise > tonight.  I will chalk it up to brainfog.  But at least I can point > you toward more info by my above statements and hopefully someone else > can help more. > TAke care, > KCat

Response:

I am reposting this under it’s own header so it doesn’t get lost in my thread. >Got a copy of the lab report from my PCP day before >yesterday but I of course can’t interpret it.  WBC 15.6 (H),  Absoulute >Neutrohils 14227(H), Absolute eosinophils L,

It would be helpful to know the reference ranges for these tests, however, in general it can be said that high wbc’s indicate possible infection, including neutrophils which serve a very specific function in fighting pathogens (but don’t ask me what it is until I can dig up my books).  It isn’t a *guarantee* that you have an infection but a lot of times when high wbcs are seen, that will be a doctors supposition.  Generally lupies tend to have low wbc counts but of course, not always. Eos are wbcs that are largely responsible for mediating allergic responses.  Having them low is not a big deal but it *does* affect your total wbc count.  I am a walking allergen.  I always have very high eos.  This just means my system is primed to react to various things that I am allergic to (peanuts, onion, mold, ragweed…ad infinitum). >ANA Pattern   Nucleolar, >Antinuclear Antibodies 1:80 (H),

You ANA is listed as "high" but it is just *barely* above what is considered negative.  They have only had to dilute it twice.  1:40 is normal or negative, 1:80 is positive.  Typically, 1:640 or greater is considered significant.  That is a total of 5 dilutions. The Nucleolar patter means that the stain for the ANAs was taken up into the neclueoli of the cell.  This is generally seen in Lupus but patterns are only help in diagnosing, they are not highly specific. Typically, a person who has a false positive ANA titre will who the diffuse pattern I believe.  To double check this info, you might go to the Hamline website and look in the "Articles" for "Lab tests used to diagnose…"  they have a good explanation for which pattern is common in which condition. >Rheumatoid Factor <20, DNA antibodies >native <3 (prior test showed 21), >SM Antibody <.91, RNP Antibody <.91, SSA<.91, SSB, <.91.  

well, all these are in normal range but that does not mean you don’t have a problem.  dsDNA is relatively specific (i know, oxymoron) for SLE but that doesn’t mean that all people *with* SLE have it.  And it’s possible to wax and wane on antibodies quite easily. RNP is often positive in scleroderma as is one of the SS’s but I can’t recall which off hand.    the other SS is often positive in Sjogrens. I don’t see the ESR value or is this note below saying that the sample was not available? >With a note on the >report that states ESRSpecimens are stable for 4-6 hrs. at room temp, 12 hrs >refridged. ESR results trend lower with increased specimen age.  Lab drew >blood and I provided urine at 2:50 PM on Thur the 15th…samples sent to the >Bay area and the report date is Mon 19th 10:41.  Not sure if any of that >info is important. >Pretty bad when the bill for the Doc and the Lab get to you before you even >have a clue to the Docs answer.  I am about ready to scream..got any idea >what the results mean?

I hope this helped a little.  I’m sorry I can’t be more precise tonight.  I will chalk it up to brainfog.  But at least I can point you toward more info by my above statements and hopefully someone else can help more. TAke care, KCat

Response:

Question:

I posted on the lupus NG and got no response  from any one.  I have had areas on the back of my head that swell and then pain and then have a little scab later.  Yesterday I felt a stab of pain and the back of my head swelled up about the size of a silver dollar and was very painful and still is today.  A friend of mine says this may be discoid lupus.  I saw my rheumy when I was just about over one of these bumps and she said she never saw anything like it and did not know what it was. Ok no jokes and I do not have fleas and or cooties ha ha but I am concerned.  I had an are on my arm that after being in Florida that got a different color and then scaley then it turned a different color brown and not it is just there.  Ok smart ASA friends is this all related to Lupus or is there something else I do not understand.   Janers — SOMEDAYS ARE DIAMONDS, SOMEDAYS ARE STONES!!!

Response:

I posted on the lupus NG and got no response  from any one.  I have had areas on the back of my head that swell and then pain and then have a little scab later.  Yesterday I felt a stab of pain and the back of my head swelled up about the size of a silver dollar and was very painful and still is today.  A friend of mine says this may be discoid lupus.  I saw my rheumy when I was just about over one of these bumps and she said she never saw anything like it and did not know what it was. Ok no jokes and I do not have fleas and or cooties ha ha but I am concerned.  I had an are on my arm that after being in Florida that got a different color and then scaley then it turned a different color brown and not it is just there.  Ok smart ASA friends is this all related to Lupus or is there something else I do not understand.   Janers

I don’t have any info on it, but could it possibly be psoriasis? You might want to have a dermatologist look at it. Steve http://www.zoomnet.net/~steve

Response:

I want to thank you JD for all the sites and pictures.  I can not believe that.  And thanks to all who responded to my question.  Now if Only I can get into the dermatologist without waiting for a month I may be fine LOL Maybe I’ll just drop in his office tommorrow and see what is up ha ha — JANERS — SOMEDAYS ARE DIAMONDS, SOMEDAYS ARE STONES!!!

Response:

My thoughts too. Char "Remember, I’m pulling for ya’.  We’re all in this together."  Red Green

Response:

- Hide quoted text — Show quoted text – I posted on the lupus NG and got no response  from any one.  I have had areas on the back of my head that swell and then pain and then have a little scab later.  Yesterday I felt a stab of pain and the back of my head swelled up about the size of a silver dollar and was very painful and still is today.  A friend of mine says this may be discoid lupus.  I saw my rheumy when I was just about over one of these bumps and she said she never saw anything like it and did not know what it was. Ok no jokes and I do not have fleas and or cooties ha ha but I am concerned.  I had an are on my arm that after being in Florida that got a different color and then scaley then it turned a different color brown and not it is just there.  Ok smart ASA friends is this all related to Lupus or is there something else I do not understand.   Janers — SOMEDAYS ARE DIAMONDS, SOMEDAYS ARE STONES!!!

For an image of Discoid Lupus go to: http://tray.dermatology.uiowa.edu/DLE-004.htm Another article with a photo is at: http://www.skinsite.com/info_discoid_lupus_erythematosus.htm The Lupus Foundation home page has info on all forms of Lupus including Discoid: http://www.lupus.org/info/general.html More images and info at: http://www.dermnet.org.nz/index.html Scary pic. at: http://www.dermis.net/bilddb/diagnose/englisch/i710010.htm All that being said, after looking at the pictures I would be hard pressed to tell the difference between Discoid Lupus and Ps. See a Dermatologist but not that idiot down on Forrester St. Hope this helps, JDshine

Response:

Question:

On Sat, 23 Oct 1999 10:55:01 -0500, john63…@yahoo.com wrote: >OK…. thanks all for the web pages. >My fiance has a few member sin her family that >have lupus and she is concerned that she may get >it.  She is 41 and has two kids. >I didn’t really know what it is.  But she has been >having a lot of cramps in her legs lately and a >butterfly blush across her cheeks at times. >Just trying to learn more abt it. <G>

Be sure to read the sections in the ASL FAQ that are pertinent to your question here.   That is, those sections dealing with "genetic predisposition".    My sister has SLE, my mother and daughter have Hypothyroidism, my mom has Sjogren’s and I have an SLE variant.  It does tend to run in families and she would probably do well to get the preliminary testing done to either put her mind at ease or let her know how she needs to take care of herself in case the tests are positive. Of course, I think I speak for most of us when I say that the *best* medicine in a chronic illness is support from our loved ones.  It is good that you are learning about this illness even if she does not have it, you will understand what her other family members have experienced. Take care, KCat

Response:

This is a good site, John. http://www.mtio.com/lupus/l7index.htm Joan Lavender Lewisville, TX

Response:

I have tons of easy to understand info on lupus on my site- http://www.geocities.com/Heartland/Acres/7228/lupus.html or www.lupus.findhere.com Joanne – Hide quoted text — Show quoted text -On Fri, 22 Oct 1999 09:27:00 -0500, john63…@yahoo.com wrote: >I am totally dumb abt lupus. >Is there a web page that explains what it is in >simple terms? >——————————- >John S Morris >Enduro Industries >Hannibal, Mo.

Response:

>This is a good site, John. >http://www.mtio.com/lupus/l7index.htm >Joan Lavender >Lewisville, TX

OK…. thanks all for the web pages. My fiance has a few member sin her family that have lupus and she is concerned that she may get it.  She is 41 and has two kids. I didn’t really know what it is.  But she has been having a lot of cramps in her legs lately and a butterfly blush across her cheeks at times. Just trying to learn more abt it. <G> ——————————- John S Morris Enduro Industries Hannibal, Mo.

Response:

The Lupus Foundation has very good information http://www.lupus.org/ Cindy – Hide quoted text — Show quoted text -john63…@yahoo.com wrote: > I am totally dumb abt lupus. > Is there a web page that explains what it is in > simple terms? > ——————————- > John S Morris > Enduro Industries > Hannibal, Mo.

Response:

In article <9XMQOHDmH9bXxyFto+Fcnrlmq…@4ax.com>, john63…@yahoo.com writes >I am totally dumb abt lupus. >Is there a web page that explains what it is in >simple terms? >——————————- >John S Morris >Enduro Industries >Hannibal, Mo.

Hundreds.  I recommend the FAQ at http://www.ghg.net/schwerpt/aslfaq20.htm and secondly my own site http://www.kitzbuhel.demon.co.uk/lupus/ — Andy For Austria & its philately, Lupus, & much else visit <URL:http://www.kitzbuhel.demon.co.uk/>

Response:

On Fri, 22 Oct 1999 19:58:26 +0100, Andy <a…@kitzbuhel.demon.co.uk> wrote: <snip> >Hundreds.  I recommend the FAQ at >http://www.ghg.net/schwerpt/aslfaq20.htm >and secondly my own site >http://www.kitzbuhel.demon.co.uk/lupus/

I just posted the newsgroup version of the faq as well for folks who have recently just downloaded. Unfortunately it threaded with the old one on my server so next time I’ll know to change the title just a little. KCat

Response:

I am totally dumb abt lupus. Is there a web page that explains what it is in simple terms? ——————————- John S Morris Enduro Industries Hannibal, Mo.

Response:

Question:

Hi all, I am looking for help.  If any of you are in the Indianapolis area (50 mile radius) could you please e-mail with the name of your doctor?  I can’t see wasting everyone’s bandwidth for a personal thing. I am looking for a doctor that isn’t afraid to be aggressive and one that won’t be intimidated by insurance companies. Thanks, Gayle WARNING: I have an attitude and I know how to use it

Response:

- Hide quoted text — Show quoted text -"G. Hensley" <ghens…@iquest.net> wrote: >Hi all, >I am looking for help.  If any of you are in the Indianapolis area (50 mile >radius) could you please e-mail with the name of your doctor?  I can’t see >wasting everyone’s bandwidth for a personal thing. >I am looking for a doctor that isn’t afraid to be aggressive and one that >won’t be intimidated by insurance companies. >Thanks, >Gayle >WARNING: >I have an attitude >and >I know how to use it

I have lupus also. I go to Dr.Hague. He’s pretty good but not very personable. He always wants to put you on prozac or some antiflamitory. I’ve heard that woman Dr. by the name of Aldo Benson is very good. She is at Methodist. I always dred going to Dr.Hague, He makes me very uncomfortable. Dr.Hague is on the Indiana Lupus Foundation. The head dude. He’s a St. Vincent dr. If my insurance would allow me I’d go to Aldo Benson. Good Luck Karla

Response: