Discussions By Condition: I cannot get a diagnosis.

I have no idea what I have.

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Anonymous
  • June 11, 2007
  • 04:56 PM

My diagnosis started out as "it's all in your head" but my medical file is so complicated that even I am confused. I had autoimmune thyroiditis in the early 90's. Earlier in life I had had a severe illness with staph and strept infections, than I had cystitis and kidney infections and allergies and always irritable bowel. Lately I found out that I have mild glucose intolerance. I did labs through a naturopath and came up with Celiac Disease, Casein intolerance, soy intolerance and some to egg. Then I cut those out of my diet, but I already had signs of ataxia. I wasn't allowed any neurological testing as they said they "couldn't justify it to my insurance company" as it was still "all in my head." I had burning in my spine and muscles. There was already alot of looseness to my skin. Now months later I have notes in my medical file about neuromuscular wasting, osteophytes, degenerative discs, benign hemangiomas, deteriorating vision from peripheral nerve problems and lots and lots of pain. I can hardly walk. I feel like I'm in no man's land not even knowing what is doing this to me. There were some obscure and brushed off notes in my records about my physical appearance being "marfan-like" as I have obstructive sleep apnea, and my skin having the appearance of Ehlers Danlos. Also, some indication that I have Asperger's. But even with that, I was still told "it's psychosomatic." I was accused of having an eating disorder or using drugs but none of it was true. I'm just a normal person trying to go on with life wondering why I've been cheated out of it by the medical system. Has anyone heard of these symptoms together?

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1 Replies:

  • Lily, enter your symptoms into a google "symptom checker"It will help you narrow it down
    Anonymous 42,789 Replies Flag this Response
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