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Thread: Hello New and frustrated..HELP

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    Default Hello New and frustrated..HELP

    Hi everyone I should say I'm new to this forum...and not yet "after 22 years" diagnosed.. with Lupus anyway..) Here is my list....I have non-erosive arthritis, brain fog, sun sensitivity, severe fatigue, night sweats, severe headaches, I have had normal MRI's and abnormal MRI's showing ischemia, I have peripheral neuropathy dx'd with abnormal nerve conduction studies, thyroid problems, urinary tract infections, swollen glands, contact dermatitis, cutaneous leukocytoclastic vasculits found by biopsy, foot drop, loss of sensation in both legs, fainting etc., I had a rheumatologist for several years, she was never sure what I had but treated me with high dose steroids due to the nervous system problems. Then I moved to a different state so of course went through all the dx stuff again. Saw a neurologist..(am going through the VA) the spinal came back normal except a slightly high white count, MRI showed chronic mild ischemia, normal BP as always, not diabetic, my GFR was 58, and my creatanine normal, Now here is the interesting part, I have always had a slightly high ANA, this is the first time I have been tested for a ds-dna, it came back more than twice the normal level..High. So I go to the VA today and the rheum. tells me that the gov't uses a lab that she doesn't feel is accurate..everyone's ds-dna is coming back high normal, I reminded her that mine was not normal but High, and that my GFR was low over a period of 3 months, and didn't this relate to lupus and kidney problems?? She said the GFR could be caused by the UTI's which everyone has..didn't trust the ds-dna result and my ANA was only weekly positive so I couldn't possibly have lupus...some auto-immune disease probably but just didn't know. As far as the nervous system stuff goes..that's not her area..that's the same thing the neuro told me..it has to be a rheum problem if I have a problem at all... When you go to the VA you see a resident then they talk to the MD in charge..you see the MD in charge for about a minute and I have yet to see the same resident more than twice. I have to say without Jesus in my life I would be banging my head on the curb. In order to be treated at the VA I have to be dx'd, or at least that's what they told me...Anyone HELP...Thanks for listening ....Teci
    Oh Yes the dx's that have been tossed around are Behcets, MS, fibromyalgia, and have been told I just have different problems that don't relate to each other.. Thanks again

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    Goodness, I am so sorry that you are in such a run-a-round with the VA hospital. I hope that you do not go out and bang your head against a curb. I would suggest that you learn as much as you can about Lupus (or about auto-immune disorders) so that you can help your doctors make some informed decisions. We cannot diagnose you, but I can say that your symptoms are consistent with those of some form of auto-immune disorder.
    Please read the stickys at the top of each forum here..do some research on your own (try the Lupus Foundation's website). Do some research about Auto-immune diseases to learn how the symptoms can overlap etc.
    If you have further questions, we would be more than happy to answer them for you if we can. I wish you the best of luck!

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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