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Old 02-13-2011, 07:00 PM
jrip jrip is offline
New Member
 
Join Date: Mar 2010
Posts: 3
10 yr Member
jrip jrip is offline
New Member
 
Join Date: Mar 2010
Posts: 3
10 yr Member
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Quote:
Originally Posted by Granacki View Post
Greetings all
I tried posting this under New member introductions and no one else with this condition responded so I'm posting it again here. I'm new and still a little murky on how to post things.

I've been diagnosed with anti MAG neuropathy, an auto-immune variant with no known effective treatments. I never hear anyone else claim to have this seemingly uncommon type and very little is written specifically about it in the usual books. (Latov, Sennett, etc.). Luckily it is described as "very little progression over many years." Does anyone out there have any experience with this and is able to tell me what "little progression" has meant for them over many years? I've had it almost three years now (diagnosis just a few months ago at age 59) and so far, it's disturbing but bearable. I have burning, tingling and numbness in my feet but no weakness yet, no balance problems, and no shooting type pains. I've cut down on walking and standing but can bike as well as ever and can still walk 9 holes by taking it easy and recovering the next day. I read about so many other really disabling types of neuropathy that I wonder if that's in my future too. Any other anti-MAG folks out there?
My husband has had this type neuropathy for many years. He's now 76. Luckily he has no pain, mostly numbness esp. in feet. Recently (the past year) developed balance problems and walks with a cane. We tried the Rituxan infusion that has helped some, but it benefitted him hardly at all.
He has no problem bicycling and it's good exercise.
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