Discussions By Condition: I cannot get a diagnosis.

Five years and still no diagnosis.

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: otowngrl81
  • December 4, 2012
  • 10:49 AM

I am 39 years old and I've been sick with a wide range of scary symptoms for over five years. At first, my symptoms started with pain and weakness in my left hand and arm. The pain was so bad, I felt whiped out by it. Several months later, I developed an arrhythmia and chest pain. While my arrhythmia episodes were substantiated by halter monitor tests, they were said to be benign and were not brought on by stress tests. My BP has always been on the low/normal side, and can vary from 90/60 to 110/73; the chest pain was not attributed to my heart (which was tested extensively.) But I found that I have slightly elevated indirect (unconjugated) bilirubin and intermittent attacks of microscopic hematuria/proteinuria in my urine. I tend (and have always tended) to be anemic--even with dietary changes. I have recently started to have chronic diarrhea after eating, as well as upper right quadrant abdominal pain, but nothing has been found in imaging and blood tests. I had been tested for sickle cell anemia, celiac sprue, cystic fibrosis, and many autoimmune disorders, but all tested negative. I did come back with a positive tilt table test, but I have had orthostatic hypotension since childhood.

My fear is that I have amyloidosis, although some of many of my symptoms are intermittent (even on bloodwork). I'm quite frustrated at this point; what can this be?

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