anyone here dealing with CIDP or GBS?

Rocky

Rocky

Member
Location
Austin, Texas
I just came from my neurologist and it seems I've lost some sensation in my lower legs. Toes have been numb for several years now. I don't want to see progression, but unless I live to be a very very ripe old age, I suppose it's not something to concern myself with...I hope!

I have CIDP, [ chronic inflammatory demyelinating polyneuropathy ] the chronic form of GBS [ Guillane-Barre Syndrome ]. My immune system went into overdrive fighting CA and when there was no more CA to fight, it decided to attack peripheral nerves.
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I'm luckier than most with CIDP and I'm grateful for that!
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It's rare, but not so rare that I'd not expect to find someone else in a group as large as this one.


Rocky
 

Thanks for the reply. Actually, I know about as much as the docs after all these years. It's pretty rare, 1 in 100,000 ... but I've met others all over the U.S. and the world via the internet, so it's not all that rare.

I was just wondering if there was someone to chat with, compare notes, etc.

Rocky
 

Rocky, I'm not familiar with that condition at all, but it sounds very serious. I'm sorry to hear you're suffering with it, and wish you the best.
 
Thanks for the reply, SeaBreeze. If there's no one else on the forum with this, I'd be surprised, but very happy!

But I'll bet there are those who are dealing with diabetes who've had neuropathies in their feet, tho' likely not extending upward.
 
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