Discussions By Condition: I cannot get a diagnosis.

a year and a half, countless tests and still no diagnosis

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: emilyann
  • March 5, 2009
  • 06:12 PM


I need help. A year and a half ago I started having occular migraines. They did an MRI and diagnosed with congenital Hydrocephalus, I'm 29. A month later I had surgery, an ETV and seemed to be recovering well. 3 months or so after my surgery I came down with what started as a cold. I took cold medicine which made me feel worse so my doc told me not to take anything. Eventually I seemed to recover, about 2 weeks after I got sick. All of the sudden my hands became bright red and I became dizzy, felt detached from reallity. My doc said it was caused by inflmation on scar tissue in my brain. These symptoms, dizziness worsening headaches, a rash that progressed into covering my legs hands and arms, sometimes my bottom, sensitivty to light and feeling spacey, bad memory, always tired, mild chest pain. A few months back I finally saw a neurologist who did an eeg, which showed seizure activity. I'm now on medication for that and for headaches but the rash is still there and I feel dizzy, weak and have trouble breathing after a running up stairs. The rash has gone unexpalined, they did a biopsy and said it showed what looked like an allergic reaction to a medication, I stopped the one I had been on and it didn't go away.It does not itch and the skin turns white wehn pressed. Steroids seemed to lessen it at first. I've had blood test's that all came back normal except for a raised ACE level, they did a chest x-ray to test for Sarcoidosis and it came back normal. As did the blood tests they did were to check for Lupus, and other autoimmune disorders. I am at my witt's end and just want to feel better. Please help me!:(

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