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I need some ideas of what to do about my undiagnosed neuro issues.

Hello everyone and thanks for your time! I have been unwell for years but it has been getting worse in the past 3 years. My main complaint is overwhelming fatigue but I also have:
*Right temple and eye pain.
*electrical shock pain to right scalp
*Word finding problems and confusion
*sensitivity to noise and ringing ears.
*Numness and bug bite sensations to extremeties.
*weakness in upper arm and legs.
*vision problems
*virtigo and nausea
The list goes on and on, but the fatigue, nausea and word finding stuff is the worst. I have had a lot of tests:
* orbital and spinal mRI are normal
* brain mri showed 8 non specific white matter lesions
* lumbar puncture had 4 oliglioclonal bands that were only in the CSF.
* my c3 and c4 are always low but everything else is normal.
* neuropsych eval showed impaired in word finding and borderline in a bunch of other areas.
*sleep study was negative for narcolepsy (brother has that) but I have hyper somnia.
The neurologist doesn't think it's MS. She says there is clearly inflamation in my brain but doesn't know what's causing it so she can't treat anything but the symptoms ie: fatigue. She doesn't seem concerned. I am seeing a therapist because of how stressed I am and I feel crazy. I am 35 but I act like an unwell 80 year old. I have 2 young kids. I want to feel better.
Neuro issues run in my family. As I said my brother has narcolepsy, sister had a brain tumor, mom has epilepsy. Any ideas of what I should do? Or why the neurologist seems unconcerned? Is there something i am missing? Thank you all for your time and support.
1 Responses
Avatar universal
Behcets disease. I have this and it causes lesions similar to MS.
1 Comments
Thank you so much for your reply! Have you had a lumbar puncture? Does you vision get jacked up in the summer? It was 85 degrees today and I am already ha ing problems. Uuurgh
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