Dear Crabby,
I hope your day is going better!
I noticed that you had some neck, spinal issues. Do you think that might have brought this on?
I have been diagnosed with progressive multifocal myoclonus, know i am starting to have tremmors.
They told me in 2006 I had ms after my spinal tap they said no ms, and i had perefrial neuropathy.
it it frustrating! I have been to Michigan, Florida, Indianapolis and Minnesota.
My last EEG said irritative epileptic episodes in the frontal lobe
they want me to go back to IU Med Center. I had a bad experience. so I am not thrilled about going.
my Neuro dr put me on Keppa it has helped quite a bit, you might look into it.
ByE
C
Quote:
Originally Posted by NeuroNixed Craig
Long story short guys. I've had diagnosed, undiagnosed, misdiagnosed diseases and conditions since symptom onset in 2000. MS, SPMS, Hereditary Spastic Paraplegia. December '08 a near fatal brain stem stroke saved by the clot buster drug, residual effects there after. I was doing really well, considering my situation, until late October '09. Very spontaneous, overt, involuntary movements primarily from the abdomen up.
No rhyme or reason for the dramatic gestures including severe head and neck distortions, facial grimacing, lip chewing, arms all over the place, distorted contorted hand and finger movements. If it wasn't me and I was watching me I would say it's all pretty darned amusing to see.
It's so bad when in meetings at church they don't know if I'm spazing or actually trying to be recognized with a question to ask. The movements are exacerbated by over stimulation such as in a busy store or watching an action packed movie. Exhaustion is ever present since it is like working out 24 hours a day. The only relief comes from taking strong doses of Clorazepam to knock me out for short periods so my body can recover.
A neurological specialist confirmed I had some type of "event" in late October and further diagnosed, Spinocerebellar Atrophy and Ataxia, Cerebellar Degenerative Disease as the main culprits. My prognosis is terminal. No big surprise there and the straight forward honesty on his part very refreshing.
Needless to say, I have no physical routine at all due to the irregular sleep-wake patterns, exhaustion after minimal exertion, use a power wheelchair in the home and power scooter when I occasionally go out.
Now, I must sincerely apologize as I can't remember why I even started this post. Take from it what you may, comment and share your thoughts, all are appreciated.
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