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Old 09-22-2006, 07:47 PM
marfla marfla is offline
Junior Member
 
Join Date: Sep 2006
Location: Orlando FL
Posts: 24
15 yr Member
marfla marfla is offline
Junior Member
 
Join Date: Sep 2006
Location: Orlando FL
Posts: 24
15 yr Member
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I remember you sharing about your sisters brain tumor. It's good to hear someone at least is studying autoimmune CNS disorders as imo many dx/names neuro disorders/diseases now are related in one way or another. plus imo there is more within our 'genes'.

I believe one day someone is going t discover more about our nervous system, find that neuro's disorders just aren't as seperate or distinguishable as they want to make them today.

Also believe one day more will be known about Lupus (i realize more is known now then even 10 years ago). I was dx'd with Lupus many years ago based on labs, and symptoms. even had a few seizures within a few months due to lupus. there is CNS Lupus but all my labs are now negative for Lupus.
so all the neuro's and rheum's i saw in 2004 said I didn't have lupus.

Well my current PCP and both current neuro's don't agree. They each believe I still have lupus, and that could be the cause of some of my neuropathy. and related to other symptoms. so they just added Spinocerebellar ataxia along with Lupus. Again imo one day more will be known of how lupus, CNS, MS, and other neuro issues that seem to attack or destroy the nerves are more related than not.

let me know if you enter that study, sounds interesting and hopeful for the future.
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June 2006 dx: spinocerebellar ataxia, a chronic progressive degenerative neuro disease, gait ataxia, truncal ataxia, sensorimotor polyneuropathy
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