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Old 02-01-2009, 10:52 AM
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BEGLET BEGLET is offline
In Memorium
 
Join Date: Sep 2006
Location: So Cali
Posts: 661
15 yr Member
BEGLET BEGLET is offline
In Memorium
BEGLET's Avatar
 
Join Date: Sep 2006
Location: So Cali
Posts: 661
15 yr Member
Default Onset speed

My PN started overnight but not with a vengence - woke up with completely numb right hand and right food that never left.... but aside from worsening balance continued like that for couple of months... having an HMO they refused to send me to neuro - by the time I got to see one by raising hecking with them - it was six months, I'd already had to leave work due to severe loss of balance, and nerve testing immediately showed damage arms and legs to sensory nerves predominately.... they called it "post viral" at the time....

then I got a very severe intestinal infection for six months - we dont know how much the infection contributued and how much one of the anti-b's contribututed (flagyl) but tests when finally kicked the infection showed body wide almost completely sensory nerve loss, autonomic damage (heart and guts), and lesser degree motor - both degernerative and demylinating with severe damage to nerve axons (they are gone).... so from original onset to wheelchair about a year and a half... that was 9 years ago.... many many tests later, high doeses of ivig, nothing has helped, I've gotten worse - cant eat solid food due to auotnomic symtoms, and they say nothing can be done - they think its a combo of genetic PN kicked up by the infection/anti-b's at the start.... I do have some days better then others - depends on if I've had to go to doc appointment or push my body to any degree - then can expect next 3 days to be very tough..... I think we all have different degrees of onset - depending on underlying cause - and how fortunate we were to be able to get adequate medical care from the start....

Last edited by BEGLET; 02-01-2009 at 11:20 AM.
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