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Old 02-18-2005, 07:26 AM   #1
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gemini05 HB User
Polyneuropathy Vera-rare neurological disease

My grandmother was diagnosed with this rare neurological disease. I'm am looking to find more information about it, but can't seem to find anything on the web.
Her symptoms include:
uncontrolabe jerking or flailing in her arms, legs and back while she is standing or walking. This does not occur while she is sitting or lying down.
Shes had one episode of tunnel vision. She was in her spare bedroom looking into her room. Everything seemed as though it was really far away. The only thing she could really recognize was her bedspread. She managed to make her way to it, and clung on to it, until she snapped out of it. She described it as looking through a telescope through the wrong end.

The episodes of flailing seem to come and go. Some days it's worse that others. Some days she dosen't experience it at all. Its actually went into remission for about a year....and now it's starting all over again.

If anybody has heard of this, or knows anything about it...I would greatly appreciate any response!!!
Thanks so much....just looking for answers.
gemini05

Last edited by gemini05; 02-18-2005 at 07:32 AM.

 
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Old 02-25-2005, 04:44 PM   #2
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Re: Polyneuropathy Vera-rare neurological disease

Five years ago I had a similar vision problem, turned out it was a migraine. Just in case (or even because of the migraines) get her to see a neurologist. She should have bloodwork to rule things out such as viruses etc. Maybe mri for brain and neck for sclerosis and bone spurs, neck/nerve degeneration, maybe muscle or nerve tests.

We don't have enough information to tell or give any useful suggestions...

Medicine is a form of playing craps or any game of chance, you must take the tests, in all likelihood the simplest illness will be present but you must go through a series of tests to rule things out. Speculating here and getting advice here may not be as rewarding as you think and may just lead you to unnecessary stress and worry...

BTW Polyneuropothy to my mind is a catchall phrase, it doesn't mean anything, you need to know what is causing the neuropthy...

Good luck!

 
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