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  • I'M SO CONFUSED, re-tests were all negative??

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    Old 08-13-2004, 09:42 PM   #1
    UT_mom
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    I'M SO CONFUSED, re-tests were all negative??

    Hello all you wonderful people--
    I'm so very confused and frustrated and glad at the same time I guess. I got a call from the rheumatologist a couple days ago and all the tests he re-did were all negative (I haven't got copies yet) ANA which was positive before showed nothing, antidsdna, sed rate, cbc, the receptionist said it was all negative and that now they think I don't even have a connective tissue disease (hallelujah if it's correct but I just don't think so). She did say that they wanted to be sure and get the biopsy results from my face back first though before we proceed. I'm wondering, I just got off 80 mg of prednisone two weeks ago, would this affect these values?? I'm feeling glad that these were negative but frustrated and confused that now they'll put me in the fibromyalgia category or chronic fatigue which is fine but there are all these other symptoms I have which will then remain unexplained. poop !
    HOpe you all have a good weekend!
    Love,
    Shawnee

     
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    Old 08-14-2004, 05:40 AM   #2
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    Re: I'M SO CONFUSED, re-tests were all negative??

    Dear Shawnee,

    For sure, some of the autoantibodies "come and go" all on their own, but I'm not sure which ones shift the most often. Can someone else weigh in?

    ANA comes and goes, too. On TOP of which a positive ANA doesn't prove lupus, as it can happen in other illnesses; or go positive due to a passing virus; or be positive without the presence of illness due to a family tendency.

    And I just read last night that the reason "anti-Ro" can exist WITHOUT a positive ANA is because it can "mask" ANA on labwork. Not good---because some drs. might not even order anti-SSA & SSA-B bloodwork until they see one or more positive ANA's.

    Could this stuff get any more confusing?!? I hope your facial rash biopsy brings back something useful, to suggest "yes" or "no" and give your drs. a headstart on what to do right now... Hang in there, OK? We are all in your corner! Always, Vee

    Last edited by VeeJ; 08-14-2004 at 05:42 AM.

     
    Old 08-19-2004, 05:55 AM   #3
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    Re: I'M SO CONFUSED, re-tests were all negative??

    Oh Shawnee,

    I'm so sorry all you have is more questions and still no answers. You must feel so frustrated and maybe even a bit angry. I wish I could offer something besides sympathy and empathy. Unfortunately, I have just begun to read my first authoritive book on the subject and I am not anywhere near knowledgable enough to offer anything useful here. I will keep you in my heart and in my prayers.

    May God Bless You
    Bonnie

     
    Old 08-19-2004, 11:12 PM   #4
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    Re: I'M SO CONFUSED, re-tests were all negative??

    Thank you both, you're such good friends! I am starting to wonder if it was the prednisone that possibly affected those labs?? I feel very confident that I have fibromyalgia and I feel quite confident I have some kind of autoimmune especially SLE because of my symptoms that just will not be explained away by chronic fatigue or fibromyalgia such as my severe sun sensitivity which just hit me in June. Plus I'm so curious as to my improvement in every aspect of my symptoms after 2 weeks of Prednisone and my flare immediately after going off ( I had tender mouth, mouth sores, sores everywhere there's a mucous membrane with an opening pretty much, swollen lymph nodes, muscle stiffness, tenderness, daily joint swelling and stiffness, etc... etc...). I don't know for sure but I just think that's too much to ignore no matter what my tests say but I understand where doctors are coming from. I have not actually obtained the lab results yet myself either.
    I have been using the cream on my face that the dermatologist told me to use for 2 weeks for rosacea and I go back to him on Tuesday and I've seen no improvement at all with it. From what he told me, if we rule out rosacea, it sounds like this has to be a lupus rash. I'm going to ask him when i go back if it might help my "case" to use a steroid cream on it if it made it go away. I'm really confused and feeling like I'm going to be like the both of you and have symptoms for years before I get a diagnosis when I'm in my forties and fifties.
    But I'm not really putting my life on hold anymore though because it's possible I may never find out what this is. I may just have to do what makes me feel better, whatever it may be. But if I want to have another baby and i'm feeling like I could handle pregnancy, I'm going to even though all the books I've looked at say that's the most terrible thing you can do if you are in process of diagnosis....well all I have to say to that is it's too bad the process can take as long as it does sometimes. People still have to live their lives to the best of their abilities and fulfill their dreams no matter what doctors say or think.
    I'm hoping I like my "real" rheumatologist that I will see in October so much better than the guy seeing me now, we'll see. If not, I'll just deal with symptoms one at a time until I can find some relief. You know the biggest thing for me is just that with the diangosis of Lupus, it just feels like it fits. I didn't know a thing about Lupus until my doctor thought I might have it based on some complaints I made to him, when I looked into it, I went back to him with a list of other lupus symptoms I had but hadn't even thought of or been bothered by so didn't think they were important. But I'm really intrigued by the improvement on prednisone, the funny thing is to is that the symptoms which improved the most are the ones I attribute to fibromyalgia (muscle stiffness, muscle aches, muscle fatigue, tender points) and from what I know of fibromyalgia and what the doc I work for said, fibromyalgia wouldn't improve on Prednisone. Anyway, we'll just keep going a day at a time I suppose. Thank you both for you support! I hope you're doing as well as possible.
    Love,
    SHawnee

     
    Old 08-20-2004, 05:49 AM   #5
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    Re: I'M SO CONFUSED, re-tests were all negative??

    Hi Shawnee,

    I have to tell you that I think I am glad I didn't know about this Lupus until now. Looking back I can pinpoint flares at different times in my life and remember how long they lasted. But overall, I have been very healthy. At one point in time I went 3 or 4 years without missing a day of school. And in my late 20s and early 30s I went more than 8 years without needing a Dr. except for yearly checkups. I don't know too many people who have been as healthy as I have overall. The flares I had were intense and painful but only ever lasted a couple to 3 months and they were gone again for a long time. Even now, the 7 month flare ended in June and I feel just like a middle aged grandma, not great but not bad either. I get sinus stuff more than I think I should but even that only lasts a few days at a time. I can't tell U the last time I had the common cold even. I get a pneumonia that can be really stubborn and hang on. Sometimes pluerisy sets in but it only happens every 5 or 6 years.

    It's really only the past 4 or 5 years that this thyroid thing has been out of control that I have been feeling poorly and now come to find that I have Lupus and RA too. Of course 4 or 5 years is a long time too but at least I didn't still have children at home. Need to go. Have 4 grandchildren over night and they R getting up. Have a good day.

    May God Bless You
    Bonnie

     
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