Discussions By Condition: I cannot get a diagnosis.

What's wrong with me? Clubbed fingers etc.

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: Anonymous
  • October 4, 2014
  • 06:48 PM

Hello ! I decided to write because I'm some incredible case , and so far no one could diagnose me. In January 2013 i got pregnant (for nine months I've had several times hemoptysis) .My doughter was born in September2013 and October I had the first X-ray was totally fine , but I was getting worse. I had night sweats , and later began to bone and joint pain which resolved after a month , spit blood from time to time , I had a continuous phlegm , my fingers are wrinkled and changed the shape ,nails also (clubbing fingers and toes)My hands go numb , still coated tongue , swollen hands, stiffnes, numbness, phlegm all the time, restless legs , increase in lymph nodes, chest pain. I am very weak . On the skin have strange red spots that appear and disappear. Besides, I often have erythema like lupus on my face ( but ANA, ANCA its negative). I was hospitalized four times. Gastroscopy was performed (biopsy of the esophagus - the result of chronic inflammation) and CT ( two times) and X-ray ( five times by the last year ), PET/CT. Nothing!!! But why I am feeling so bad? HRTC suggested chronic bronchitis that’s all, four times bronchoscopy ( hemosiderin that’s all what they found).

I have cought from time to time, no fever .I already don’t ask for help but maybe someone can advice what else I can do? Cause all doctors says that they can’t help me. I visited perhaps a hundred doctors and no one can help me. My condition is worse day by day. I don’t know what to do . I don’t know where to look and what direction to go.
My grandma had vasculitis, but she died on lung cancer. Her father never smoke, he also died on a lung cancer.

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4 Replies:

  • Have you seen a rhuematologist? You said your ANA and AnCA are negative, what other Autoantibody tests have you had? full ANA panel including SSA SSB double strand DNA, etc can be done. What your results for completemetabolic panel? Depending on those results more in depth tests on liver and kidneys may need to be done, possibly including autoantibodies involved in autoimmune liver and kidney disease. Have you seen a pulmonolgist, perhaps they should do some pulmonary function test, heart echo?
    Anonymous 1 Replies
    • October 18, 2014
    • 06:50 PM
    • 0
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  • Firstly, thank you for your answer! It's important to me. Of course I went to rheumatologists, everyone says the same thing: "There is no antibodies. There is no disease". If you ask me about antibodies: had only ANA, ANCA ANA2 and no one even mentioned the rest because all was negative. My metabolic panel like ALT, AST, GGTP Glucose, sodium, potassium, creatinine, CRP it's perfect, blood test too. So now about the lungs. I had all possible tests spirometry, diffusion, blood gasmetry.
    Anonymous 1 Replies
    • October 23, 2014
    • 07:13 PM
    • 0
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  • All was perfect. I have EKG only.
    I had dermatomyositis muscle biopsy and something else from my lips ( Sjorgen's syndrome). I totally don’t know why because I don’t feel dry in my mouth or eyes or anywhere else. Yesterday, my fingers were blue. I'm losing my hair. In a last hospital diagnosed erythema ( my face) and dermographism, beta globulin (serum protein) to high ( last year was ok). I can write on the skin.
    Anonymous 1 Replies
    • October 23, 2014
    • 07:19 PM
    • 0
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  • i am 30 yrs old with clubbing of fingers and toes, and hypertension but my doctor says im fine but my gut says other. any advice???
    Anonymous 1 Replies
    • December 16, 2014
    • 06:25 AM
    • 0
    Flag this Response
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