Question:
On 08 Jun 2000 02:56:01 GMT, scroyle…@aol.com (SCroyle909) wrote: >Of course, giving a good history is essential too. The other day I took my >daughter to two new rheumatologists at NIH.
on this topic – Sandra, I typed up my history early on, back as far as I could remember having significant, possibly related, problems. I will do the same for this vertigo if it continues as I have had a "fullness" or blocked feeling in my ears for over a year but have disregarded it as just allergies or something. anyway… once I typed it up I was able to just go in and alter it based on new findings when I would go in for my biannual rheumy visit. I included all meds I was on and at the bottom would type in my major concerns if there were any. This really has helped my rheumy keep track of things and also helps me remember the stuff I want to discuss. I usually put no more than three *major* bullets for what is hurting or has changed. I put these in bold typeface. The rest are in normal type face and she knows that this means I just want her to be aware of them but am not in need of a response. JTIS, KCat in Houston
Response:
Which type of Lupus does she have, discoid or SLE?????? mookeysmom/Tina To see my mookey & baby keisha click links: (newer pics are added to bottom of page) http://community.webshots.com/album/1423111eQdinNWDrt
Response:
Hi Tina, Are you asking me or Cheryl? Jackie Support diversity and freedom for all…buy Proctor and Gamble products and fly United Airlines. "mookeysmom" <rmookeys…@aol.comnojunk> wrote in message
news:20000524114853.14610.00000015@ng-ff1.aol.com… – Hide quoted text — Show quoted text -> Which type of Lupus does she have, discoid or SLE?????? > mookeysmom/Tina > To see my mookey & baby keisha click links: > (newer pics are added to bottom of page) > http://community.webshots.com/album/1423111eQdinNWDrt
Response:
On Wed, 24 May 2000 08:44:58 -0500, "Jackie, Michelle and the kids" <hallerfa…@machlink.com> wrote: >If this is a duplicate post I apologize…I’m tired and kind of punchy >rightnow and I think I hit the wrong button.
I only see one. 
just a brief clarification. SLE is "potentially progressive" but by medical definition not truly progressive. Some women actually start to improve after menapause. A lot of people go through lengthy remissions and some folks never get any worse than they were the day they were diagnosed. As with so many things medical, individual reactions are varied.
Response:
Janers and Jackie hit on the major points. I’d like to point out too that my sister, who was diagnosed 12 years ago, likes to find many reasons for her discomfort but often (most of the time?) hesitates to blame the SLE for her symptoms. Some are *not* connected, but many are. She takes meds for the symptoms but refuses lupus meds (plaquenil, anything) because she "isn’t sick like" I am. huh.. she’s the one with the dx. So there’s an aspect of this that this woman may not be discussing – that is that if she gets migraines or joint pain she may be saying to herself "oh it’s stress" or "I’m just tired" or "I worked too hard today" when in fact it is a lupus symptom. No, you’re certainly not stupid. And yet another possibility is that she was diagnosed with minimal symptoms/blood work – while most doctors are very hesitant to dx SLE, some who really don’t know better will dx with a very low positive ANA. It’s *possible* that she doesn’t have SLE at all but "just" rosacea (which can often look similar to the rash). You can’t really know unless you talk at length to her and then you’re only guessing. But the fact of the matter is, we are all different. I don’t even have a full dx but I certainly am sick much of the time these days. The question for you becomes: Are the meds helping you? If you miss a dose or two of the plaquenil do you feel worse? (I know I do). If they are helping then you are not taking them for "no reason" (ick, a double negative). HTH, hugs. KCat
Response:
In article <PJQW4.4128$mZ3.1538…@newsrump.sjc.telocity.net>, Cheryl C. <tekwri…@telocity.com> writes >Hi all, >It’s been awhile since I have been here and here I end up returning with a >really dumb question.
No such thing here. However the *answers*… >I recently met a woman at the community where we will >be moving to soon who said she has had lupus for 8 years and has never had >to take any kind of medicine for it. She said that once in awhile she gets >the butterfly pattern on her face, but that’s all. Am I missing something >here? I have been on plaquenil and several other meds for over 13 years! >Have I been taking meds for no reason? I have tried to go off all of my >meds, but I feel so bad after a few weeks that I end up back on them. >Usually due to kidney problems. >Am I just dumb or what?
No. Life’s a bitch.. — 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:
I have only recently been dx with Lupus SLE yet I’ve been told I have had it since childhood. I’m on nothing. Do I hurt? Yes. Bad? No. Some days are worse than others. Have I hurt really bad? Oh yes! I have had some of the most awful pains. Actually I am relieved because now if I do have a problem they know what is behind it and will place me on hopefully the proper medicine and thereby giving me some relief. I’m thrilled they do not have to place me on something daily and if I can get by with some aspirin a day that is just great. What I have learned is that everyone is different. This lupus stuff can just attack parts of our body without warning. It can run rampant attacking multiple things at the same time. Getting it calmed down and keeping it calmed down is the big mystery to me. Stress is a big factor for me. Stress obviously can trigger huge problems for me yet sunlight seems to be something that helps me. Take away the sunlight and I drop to a draggy stage of depression with no energy. We are all very different. And that is probably why the doctors have so much trouble with this and why our "friends and families" also seem to not understand. We aren’t walking around with both arms in a casts therefore we should be able to push open that big public door. Somehow "they" cannot comprehend when that big old door just doesn’t budge when we go to push. I won’t say how many times I have put my foot on the back of the pickup truck bed expecting my body to follow and nothing – absolutely nothing happens yet other times I could probably bench press several hundred pounds with those legs. We look healthy so we are supposed to be healthy. People can’t see kidneys or other internal organs. If you are having those types of problems you probably should stay on your medication. You might consider talking to your Dr about weaning you down to lower doses – if that would be safe. My big problems seem to come and go. In the past I have has six and eight months of unbelievable pain. I’ve undergone all sorts of tests and everything was inconclusive. My Dr now just shakes his head in disbelief that I was never tested or dx as lupus yet my history points to it over and over agin. I read about all the meds you guys take and I can’t imagine having to take that much stuff. I guess I need to thank my lucky stars that I am doing as well as I am. My lupus loves to attack my arteries and my nerves. So what will life be like for me in 20 years? I have no idea. I’ll probably be popping those 40 pills a day. Bev (out on the web via my husband’s computer)
Response:
Thanks all for the answers. Even after 13 years of this disease I find that it can and does surprise me. There is so much I don’t know about it, even now. I had a doc appointment wednesday and asked him about this and he said it just comes with the territory. Some people have this DD all their lives and never feel ill or display symptoms. I had tried to ween myself down to one plaquenil a day but I felt so bad I went back on my usual dose. I guess I’m just one of those people who have to take the meds. But I don’t have to like it. Again, thanks for the answers. It has given me some insight into this stupid, aggravating disease. Cheryl C.
Response:
Cheryl, I am like your friend (never had a flare and never have taken any medication), although I have been diagnosed with Lupus for about 10 years. I was only 23 when diagnosed so maybe I just haven’t had the complications *yet*. I am a strict vegetarian (no meat, dairy or eggs), eat only organic stuff, exercise four times per week,avoid the sun like the plague, don’t smoke or drink, etc. I always hope that it is these factors that have helped me avoid problems but who knows. I also won’t get pregnant since this can easily cause complications. I hope I will always be this healthy. Maybe my health regimen is irrelevant, but I cling to it since I am now 32 without any real problems. My only symptoms are blood tests that show connective tissue disease, bouts of low platelets, and occasional fevers. Maybe we all just have diffierent responses to the disease. I hope yours remits so you can be free of medication someday too. Good luck.
Response:
Cambridge: I am alot like you. I was dx with SLE in May 98 with symptoms of low platelet counts, low white counts, hair loss, and my blood tests also show connective tissue disease. How do you treat your low platelet count when it happens? I take plaquenil 200 mg/day. JBAB
Response:
Hi~I just read your post and you sound a lot like me, with the same symptoms of low platelet counts & fevers, plus a few others. I also get rashes now and then. I was wondering how you were diagnosed….ANA? My doctor doesn’t believe that I have Lupus, but I do. With symptoms so similiar, it is funny how one doctor says yes, while another says no!
Response:
I can’t diagnose you, but I can say that I was convinced too that my daughter had lupus a good month before her doctors were. Regarding that, I was in an elevator the other day at NIH and overheard a physician/researcher having a conversation with some of his students. He was telling them that in his experience patients generally know what they’re talking about. He said that they look at diagnostic criteria and are very astute about which ones they fit. They’ll say "I fit this here and here, but not that," or "I fit this set of criteria better than that" and so on. I have to admit I was kind of surprised to hear a physician saying this, though I did find it very refreshing. I think it’s true too. Keep in mind I’m not saying that patients will necessarily be accurate in their self-diagnosing; however, there is a saying in medicine that if you listen to the patient long enough he’ll give you the diagnosis. IMO, lupus is a good example of this. During the quest for a diagnosis, most of the people I’ve encountered with lupus have become extraordinarly educated about their illness. They get a very good idea of where they fit the criteria and where they don’t. If doctors listen more to what they’re saying, their job might often be easier. Of course, giving a good history is essential too. The other day I took my daughter to two new rheumatologists at NIH. I had to start from square one giving her entire history, labs and so on. At the end they remarked that if everyone gave such a good history they’d be out of a job. They immediately agreed that my daughter has CNS lupus and immediately started suggesting ways to further improve her treatment. Still, whether or not you have lupus I couldn’t say. It’s a complicated puzzle. There is a lot more than ANA to consider. ANA isn’t in itself specific for lupus. In fact, some normal individuals can have low positive titers. The best advice I could give you would be, to become as educated as possible about lupus. I’ve found Dr. Wallace’s THE LUPUS BOOK, 2nd ed., to be most helpful in accomplishing this. Once you know more about it, you can talk about it with your doctor on a more equal basis. I’d ask both doctors their reasoning for saying you do or don’t have lupus, and discuss it with them. Having good communication might help clear up the confusion as to the diagnosis….if not now, then hopefully in the not too distant future. Sandra
Response:
If this is a duplicate post I apologize…I’m tired and kind of punchy rightnow and I think I hit the wrong button. Hi Cheryl, My wife was diagnosed with an unspecified autoimmune disorder more than three years ago, and then doctor said she was quite certain it would eventually develope into SLE with time. Up until recently she has taken nothing stronger than ibuprofen, but over the winter she was put on Relafin. Is it possible this woman you met has a low form of Lupus, or perhaps it simply hasn’t progressed to a point where she needs meds? As I understand it this is a progressive disease and it could be many years before my Michelle gets very ill…then again things could take a turn for the worse tommorow. I don’t understand Lupus very much, but I’ve noticed that it affects everyone differently and there are no garuntees as to what will, or will not happen. Good luck. Jackie Support diversity and freedom for all…buy Proctor and Gamble products, and fly United Airlines. – Hide quoted text — Show quoted text —— Original Message —– From: "Cheryl C." <tekwri…@telocity.com> Newsgroups: alt.support.lupus Sent: Wednesday, May 24, 2000 8:26 AM Subject: hate to sound stupid but I have a ?? > Hi all, > It’s been awhile since I have been here and here I end up returning with a > really dumb question. I recently met a woman at the community where we will > be moving to soon who said she has had lupus for 8 years and has never had > to take any kind of medicine for it. She said that once in awhile she gets > the butterfly pattern on her face, but that’s all. Am I missing something > here? I have been on plaquenil and several other meds for over 13 years! > Have I been taking meds for no reason? I have tried to go off all of my > meds, but I feel so bad after a few weeks that I end up back on them. > Usually due to kidney problems. > Am I just dumb or what? > Cheryl C. "Cheryl C." <tekwri…@telocity.com> wrote in message news:PJQW4.4128$mZ3.1538089@newsrump.sjc.telocity.net… > Hi all, > It’s been awhile since I have been here and here I end up returning with a > really dumb question. I recently met a woman at the community where we will > be moving to soon who said she has had lupus for 8 years and has never had > to take any kind of medicine for it. She said that once in awhile she gets > the butterfly pattern on her face, but that’s all. Am I missing something > here? I have been on plaquenil and several other meds for over 13 years! > Have I been taking meds for no reason? I have tried to go off all of my > meds, but I feel so bad after a few weeks that I end up back on them. > Usually due to kidney problems. > Am I just dumb or what? > Cheryl C.
Response:
Hi all, It’s been awhile since I have been here and here I end up returning with a really dumb question. I recently met a woman at the community where we will be moving to soon who said she has had lupus for 8 years and has never had to take any kind of medicine for it. She said that once in awhile she gets the butterfly pattern on her face, but that’s all. Am I missing something here? I have been on plaquenil and several other meds for over 13 years! Have I been taking meds for no reason? I have tried to go off all of my meds, but I feel so bad after a few weeks that I end up back on them. Usually due to kidney problems. Am I just dumb or what? Cheryl C.
Response:
Cheryl. all of us are different even though we have lupus. Our systems are different. Lupus effects people in different ways. This woman is damn lucky if she only has a rash once in awhile. Was she tested? Probably didn’t get to ask her. I had joint pain in 93 and doc did ANA and she said it was positive and I had lupus. Ok, fine and sent to rheumy and he said arthritis inflammatory, did a couple tests and never once really brought up lupus again. Then in 97 more joint pain and fatigue and well a long story and another rheumy said don’t ever say you have lupus, insurance will have a cow. took me off cortisone and bingo, I got so bad I could not walk or barely feed myself due to pain. Ended up in a clinic in Ohio and got diagnosed with lupus and MCTD. Called that rheumy and asked him why in the hell he did not do more testing to find this. His reaction, well you symptoms did not warrent it and your sed rate was only slightly elevated. I was mad and he also told me that since I had a pos ANA in 93 that it just took 5=6 yrs to really show up in you. Yeah right… so again we are all different. At least I got a decent doc who knew what she was doing this time. Janers —
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