Discussions By Condition: I cannot get a diagnosis.

No diagnosis--any ideas?

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: Anonymous
  • April 9, 2008
  • 05:53 PM

I am recovering from an extended illness (several weeks) that came on as an "attack" of some kind. I had neurological symptoms that started with ataxia and progressed to changes in vision, hearing and mental status. I had severe abdominal pain that was more right sided and radiated to my back. After a period of weeks I became bed ridden and had trouble walking. I went to the wrong doctor and was told that it was "all in my head" which forced me to struggle to get help elsewhere and fight the damage to my medical records and the stigma. Finally the attack of sorts waned and I have been left with neurological abnormalities that showed up in my upper body as well as central sleep apnea, balance problems, numbness and lots of pain. Previous I had been diagnosed with autoimmune thyroiditis but it was under control with medication. My blood sugar was a little higher but certainly not in the range of diabetes. I do not drink alcohol and I do not smoke but I had been on a variety of medications for some time. I have no idea what happened to me or why. This is the second time in my life that I have had such an attack with neurological problems although the first time it happened several years ago it wasn't of this magnitude. One of the things that showed up on a urinalysis was a mildly elevated porphyrin but once the symptoms decreased it was too late to repeat testing for a diagnosis. I do not know what to think or believe but I do live with some fear and frustration that should this happen to me again I won't survive it or will be severely disabled. It was awful to try to get medical help and not be believed for some time. I welcome any ideas or help.

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