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Thread: Suspect, but not diagnosed.... I have questions

  1. #1
    Join Date
    May 2006
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    Default Suspect, but not diagnosed.... I have questions

    Okay, I've been a suspect for lupus since 1998. That's also the last time I went to a rheumetologist (sp?). I had been diagnosed previously as having an "autimmune disorder of unknown origin". In 1998 when I saw the rheumetologist and he strongly suspected lupus and recommended I begin steroids. I wasn't ready for that. I was thin at the time and didn't relish the thought of the effects on my body steroids would have. All these years I've been meaning to go back and just never did. Part of it was because my doctor often said the cause of my complaints were "psychosomatic" which is her way of saying I'm nuts. It didn't matter that there was positive test results that showed otherwise. She would say that the mind is a very powerful thing and depression can make us physically ill. I feel she feels that I am my mother, who is bipolar, and treats us both the same. Because of this, I quit going to the doctor all together until I got pregnant with my son, Jamie. I had a difficult time getting pregnant and suffered several miscarriages before having him (due to PCOS). I had a difficult pregnancy which ended in months of bedrest (due to incompetent cervix). After giving birth, my health seemed to have deteriorated a lot. At first I passed it off as being weak due to my prolonged bedrest. Soon I wasn't able to pretend things were okay. I ended up at the ER with pancreatitis one night. I had acute pancreatitis when I was 15 and no cause had been determined. After so many years I didn't think I would ever have it again. Another night I went to the ER thinking I had pancreatitis and it ended up being swollen lymph nodes in my stomach. That was probably the most painful thing I have ever experienced. The doctor in the ER seemed to think this was rather serious. She talked to my doctor and I had an appointment first thing in the morning. All that came out of that appointment was a lot of pain medicine, no answers.

    Here are some problems I'm having...

    Tiredness, weakness
    Insomnia or conversely, long periods of excessive sleep (I know that sounds crazy)
    facial discoloration (could be rosacia, too)
    redness with little bumps like cold prickly bumps on chest
    sun sensitivity, 10-15 minutes of sun exposure can make me experience nausea & vomiting
    mild to moderate headaches
    muscle aches
    stiff, painful hands
    arthritis in my back
    thinning hair
    weight gain
    vision problems

    I've tried to do some research online, but so many diseases/syndromes mimic each other or have similar symptoms. I just don't know what to think. I have PCOS and type II diabetes. Many of my symptoms can be caused by these. I went to the doctor on 4/21 and finally got some bloodwork done. None of it seems too bad. My ANA panel was 23, which is listed within normal parameters. I know I have had positive ANA panels before. It's one of the reasons that they have me listed as having an autoimmune disorder. I wish I knew what my levels have been in the past. It looks like 23 is a pretty good ANA, though. My C-reactive protein, Quant is higher than the limits, but from what I can find online is okay. It is 5.7H mg/L. This paper says 0.0-4.9 is within the limits. I don't know what Microalbum.,U,Random is, but it's high. It says mine is 23.0H and normal limits are 0.0-17.0. My white count, red count, hemoglobin, hematocrit, platelets, and neutrophils (whatever that is) are all slightly elevated. My liver enzymes (ALT(SGPT)) are elevated.

    I don't know what all this means for me. My doctor says I probably have lupus and then I get these test results and it looks like my ANA and C-reactive protein levels are okay. Does that mean I don't have lupus? Does that mean it really is all in my head? Surely it all can't be. Is it stemming from something else? If anyone can make sense of all this, can you share your opinion with me?

  2. #2
    Join Date
    Nov 2001
    Victorville, California
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    Hi: Unfortunately, we are not doctors and cannot diagnose you..even given the lab results that you provided.
    What I can say is the "It IS NOT all in your head!!" I understand the confusion when trying to research your symptoms. Lupus has been called the "Great Imitator" because its symptoms do imitate so many other diseases.
    Lupus is s a chronic disease with many manifestations. There are many of us who are ANA negative, but still have been diagnosed with Lupus. The diagnosis of SLE is based upon the presence of at least four out of eleven typical characteristics/criterias for and of the disease:

    1) malar (or "butterfly") rash across the nose and cheeks
    2) discoid rash
    3) sensitivity to light, or "photosensitivity
    4) oral ulcers.

    The next four are based on systemic criteria:
    5) arthritis
    6) serositis
    7) kidney disorder
    8) neurologic disorder.

    Finally, there are three laboratory criteria:
    9) blood abnormalities
    10) positive antiphospholipid antibody test
    11) immunologic disorder, including lupus anticoagulant, positive anti-double-stranded DNA, false-positive syphilis test, or positive anti-Smith test (such as anticardiolipin).

    Learn about the tests and criteria for the disease so that you can take control of your care. You want to know exactly what is causing your illnesses - so you want to know what tests should be run in order to get a yes or no diagnosis. Insist that you doctor take you seriously, if he/she doesn't, insist on or find another doctor who will!

    I wish you the best!

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