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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10 Replies:

  • I can't seem to get the search to work for me. I have not moved though and am not aware of any towers near me.
    emilyann 1 Replies Flag this Response
  • Emilyann, ignore these ridiculous ideas from Blaze. There is NO MEDICAL EVIDENCE at all for these posts. Don't waste your time. Blaze, you should be ashamed of yourself. I am tired of you deliberately misleading people who have real medical problems. Your actions are deceitful and causes emotional and physical stress to people who are already suffering. You may believe what you post, but no-one else in the medical world does.
    happyprince123 33 Replies Flag this Response
  • Hi emilyann, happyprince is completly right. Pay no heed to Blaze, she's a scaremonger :rolleyes: shame on her. Emilyann I'm sorry I can't help you, but hopefully someone will answer you soon. Best wishes hun :)
    Tootsie 628 Replies Flag this Response
  • Sometimes it's good to group symptoms to help the doctors find the answers but with no luck so far maybe try to un-group them.Have you ever seen an eye specialist for the migraines ?Just a quick thought.. I hope you find the answers :) Samantha http://www.undiagnosedillness.org
    Anonymous 42,789 Replies Flag this Response
  • Emilyann, please could you give me some more details of what is going on now?Let's start with how are you generally in yourself?What is the main problem?When does it occur?Does anything make it better/worse?What medications are you taking?Did they tell you what type of epilepsy you had? Where is this "scar on the brain"Please try and describe things clearly, it'll help me understand what's going on.
    happyprince123 33 Replies Flag this Response
  • You're exactly right about Blaze.I sort of started attacking her a few weeks back and now almost everyone sees her for what she is,and I feel so relieved by that.
    richard wayne2b 1,232 Replies Flag this Response
  • What's an ETV?
    richard wayne2b 1,232 Replies Flag this Response
  • Its an endoscopic third ventriculostomy. A fairly new and very high-tech operation to look inside the ventricles and to join the ventricles directly with the subarachnoid space and thus bypass any blockage to CSF flow.Have a look here:http://www.upstate.edu/practice/neurosurgery/education/med_students/3v/or here:http://www.medscape.com/viewarticle/520953_3
    happyprince123 33 Replies Flag this Response
  • What meds have they tried on the rash?Describe the rash:is it smooth but colored or does it have raised bumps?Does it itch?What makes it worse?What makes it better?Is it improoving or getting worse?
    richard wayne2b 1,232 Replies Flag this Response
  • What meds are you on?
    richard wayne2b 1,232 Replies Flag this Response
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