Discussions By Condition: I cannot get a diagnosis.

Acquired nystagmus, periodic symptoms, need direction

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: batguin
  • December 19, 2011
  • 07:00 PM

Hey everyone... I just need a road to take here. I'm 25 and since 2007 I've experienced nystagmus and balance issues, with other stuff in the way too. The balance issues seem to come and go, but the nystagmus (a constant, always horizontal one) has always been here. I've had two instances of optic neuritis (with full recovery, once with steroids in a few weeks, one without--but it took months). I also am having simple partial seizures that are treated to near extermination with anticonvulsants. I also have daily headaches, migraines more than 15 days a month.
I've had multiple MRIs, all showing no indication of any lesions or anything on my t-spine, c-spine, or brain. Only thing that one showed was a slightly herniated tonsil that the repeat MRI didn't show. My evoked potentials showed no oddities, but the EEG showed odd activity that led my neurologist to believe that they were seeing seizure activity of some sort. I've seen a doc at an MS clinic that said since I don't have lesions consistent with MS that I 99.9 % don't have MS, but recommended neuro-PT for my balance, which improved it a little.
I constantly feel awful, and I'd like to see if anyone else has had something like this go on and can shed some light about what to do from here or what I should be following up on. My opthalmologist tells me that I should not drop the issue because nystagmus is not normal to come on at 20, and that losing vision isn't cool either. It might not come back next time. I'm just getting to the point that I'm worn down and I am so sick of talking to doctors that I would rather be sick with no hope of getting better than talk to another one who will get my hopes up only to tell me I'm a medical mystery and that I can't be helped.
Anyone with insight would be appreciated!

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