Guest guest Posted September 17, 2001 Report Share Posted September 17, 2001 Sounds like you have some of the symptoms of fibromyalgia. Something to check into. Good luck! D in MN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2001 Report Share Posted September 17, 2001 In a message dated 9/17/01 10:36:24 PM Central Daylight Time, erinananda@... writes: > my rheumy said I have PA. But I don't have > morning stiffnes, just pain after using joints. Unilateral > sacroiliitis, pain from light, noise; " brain fog " . > Sounds like it is PA. I went to the orthopedic surgeons 6 times mainly with pain in joint(1 at a time). I would have sworn the bone was broke it was so painful. But it would only last 3 days in the beginning. I never woke up stiff or sore at the start. Finally the ortho told me to see a epidemiologist ( sounds like a bug doc hey?) to get tested for an autoimmune disease. Luckily the one I went to was also a professor of rheumatology.He tested me for autoimmune and it came back positive. He then took 6 more tubes of blood to test for which autoimmune disease I had and they all came back negative. His diagnosis was psoriatic arthritis since I had psoriasis and it stayed the same through different doctors until June this year. It was them the rheumatoid factor came back as positive so now I have both. It was a couple of years after being diagnosed by the first rheumy that I started having more and more and more painful swells. All in the beginning were after doing something I didn't think was strenuous but my body said " OH YES IT WAS " . Have faith in the diagnosis. If you haven't been tested for rheumatoid factor you might want to ask to be tested. Another thing I advise is to find a proactive doc as soon as possible to get started on DMARDS before your joints begin to erode. Best of luck Wishing painfree days Chicagoland Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 In a message dated 09/17/2001 11:41:20 PM Eastern Daylight Time, erinananda@... writes: << But I don't have morning stiffnes, just pain after using joints. Unilateral sacroiliitis, pain from light, noise; " brain fog " . I thought morning stiffness and sausage digits were necessary for diagnosis. Any relevantt experiences would be appreciated. >> Hi Fred - I didn't have and still don't have any sausage digits. I don't really have morning stiffness every day either - some days or worse. I have quite a bit of stiffness though after getting to work (trying to get out of the car after a 30 min. commute). So anyway, to answer your questions, sausage digits and morning stiffness are symptoms of PA, and they are very common, but I don't think they are necessary to make the proper diagnosis. Best of luck to you in your treatment plan, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 " Fred " wrote: > because I have psoriasis my rheumy said I have PA. But I don't have > morning stiffnes, just pain after using joints. Unilateral > sacroiliitis, pain from light, noise; " brain fog " . > I thought morning stiffness and sausage digits were necessary for > diagnosis. > Any relevantt experiences would be appreciated. Fred--One thing I have figured out from this board is that two people with PA can have completely different and non-overlapping symtoms, and that even the psoriasis sometimes shows up after the PA! I do not have sausage digits, and my hands are mostly unaffected, but I can barely walk much of the time due to pain and swelling in my ankles, feet, and knees. Others of us have most symptoms in their hands and arms, still others in their backs and hips. I am beginning to think there is some kind of underlying disease that expresses itself differently in different people, whether it ends up being called PA or RA or lupus or any of the other many many inflammatory diseases. I personally am glad I have a diagnosis to work with, since I can now start the process of finding the right treatment. (I couldn't handle MTX and am now starting Arava--so far so good after 5 days.)I know that the morning stiffness thing is pretty much a required symptom for a dx of RA but I am not sure that's true for PA, but most of your other symptoms sound pretty typical, including the light and noise sensitivity. (I also have those.) DO you have odd, ridged, or detaching nails on your hands or feet? SOmething like 80 percent of us have that. The main thing is to find some treatment that will make you feel better, regardless of what the diagnosis is. Nobody should have to go through the discomfort you are having without some help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 In a message dated 09/18/2001 1:08:19 PM Eastern Daylight Time, momscmbc@... writes: << If you haven't been tested for rheumatoid factor you might want to ask to be tested. Another thing I advise is to find a proactive doc as soon as possible to get started on DMARDS before your joints begin to erode. >> I agree with Sharon on that - It's sort of funny that some of us have posted " oh yes, you probably have PA " and others have said " doesn't sound like PA " . And we wonder why our doctors have such trouble diagnosing! The problem with PA is that there is no test FOR it, doctors can only rule out other things. I'd say the bottom line is, make sure you have doctors that you trust and have faith in - then believe in them and their diagnosis and learn all you can about treatments, etc. and take an active role in your care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 In a message dated 09/18/2001 1:11:06 PM Eastern Daylight Time, sarahr@... writes: << DO you have odd, ridged, or detaching nails on your hands or feet? SOmething like 80 percent of us have that. >> - I don't have nail problems, or much P except a bit on the scalp, or sausage digits, or morning stiffness, or brain fog. But I do have PA - go figure Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 Hi Fred, It has been my experience that if you have psoriasis, problems with the joints are attributed to psoriatic arthritis. A blood test will tell if you have arthritis, although some of the same indicators are indicative of rheumatoid arthritis and PA. I don't think you have to have morning stiffness or sausage fingers. I didn't. I started out with water on the knee (my knee swelled up like a small grapefruit). And my fingers never got " sausagy " , just stiff and eventually a little crooked. Hope this info helps. -- Jan O', Alaska. Fred wrote: > because I have psoriasis my rheumy said I have PA. But I don't have > morning stiffnes, just pain after using joints. Unilateral > sacroiliitis, pain from light, noise; " brain fog " . > I thought morning stiffness and sausage digits were necessary for > diagnosis. > Any relevantt experiences would be appreciated. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2001 Report Share Posted September 19, 2001 : What symptoms do you have? How were you diagnosed? Re: [ ] Re: incorrect diagnosis? > In a message dated 09/18/2001 1:11:06 PM Eastern Daylight Time, > sarahr@... writes: > > << DO you have odd, ridged, or > detaching nails on your hands or feet? SOmething like 80 percent of > us have that. >> > - I don't have nail problems, or much P except a bit on the scalp, or > sausage digits, or morning stiffness, or brain fog. But I do have PA - go > figure > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2001 Report Share Posted September 19, 2001 To All: There is a blood test that will give a positve diagnosis for PA. It is called the HLA- B27. It is antibody test. A large percentage of PA suffers will have a positive titer for this antibody. I'm not sure though of the exact percentage of PA sufferes with this positve antibody. Mine came back mega high. Charlene Re: [ ] incorrect diagnosis? > In a message dated 09/18/2001 1:08:19 PM Eastern Daylight Time, > momscmbc@... writes: > > << If you haven't been tested for > rheumatoid factor you might want to ask to be tested. Another thing I > advise > is to find a proactive doc as soon as possible to get started on DMARDS > before your joints begin to erode. >> > I agree with Sharon on that - It's sort of funny that some of us have posted > " oh yes, you probably have PA " and others have said " doesn't sound like PA " . > And we wonder why our doctors have such trouble diagnosing! The problem with > PA is that there is no test FOR it, doctors can only rule out other things. > I'd say the bottom line is, make sure you have doctors that you trust and > have faith in - then believe in them and their diagnosis and learn all you > can about treatments, etc. and take an active role in your care. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2001 Report Share Posted September 20, 2001 In a message dated 09/20/2001 2:46:02 PM Eastern Daylight Time, mamacin@... writes: << : What symptoms do you have? How were you diagnosed? >> - I had a bacterial blood infection (psuedomonis) after surgery which set off my first flare - a huge one. After a week in the hosp. on IV anti-biodics, my knees became red and hot to the touch, my wrists ached, I couldn't walk from one room to another without holding onto something and screaming in pain. This got worse and worse. I was told it was everything from " drug fever " to PMS. Finally, when I cried in my doctor's waiting room and told her I'd be in a wheelchair by next week, I was sent to a rheumy. She tested me for Lupus, Lyme, RA, etc. which all came back negative. Because of the one tiny spot of P on my wrist, the hotness of my knees and the way this came on after a major bacterial infection, she dx'ed it as PA. I think she was right because I've responded to MTX and Prednisone when all the other NSAIDS did absolutely nothing for the pain. I'm starting Enbrel soon as I want to get off the MTX because of elevated liver enzymes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2001 Report Share Posted September 20, 2001 In <003d01c14196$6fe282e0$9bd5e13f@e0h4n7>, on 09/19/01 at 11:37 PM, " Charlene Ahrens " <charahrens@...> said: >There is a blood test that will give a positve diagnosis for PA. >I'm not sure though of the >exact percentage of PA sufferes with this positve antibody. These two statements sound contradictory - could you explain, please. -- - Mark ----------------------------------------------------------- marka@... ----------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2001 Report Share Posted September 20, 2001 In a message dated 9/18/01 12:10:46 PM Central Daylight Time, sarahr@... writes: > (I couldn't handle > , I'm so happy for you and I hope the Arava continues for a long long time. Some good news is refreshing to hear. Chicagoland Sharon Quote Link to comment Share on other sites More sharing options...
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