I was diagnosed with anti-MAG neuropathy in 2002. I was successfully treated with IVIG until 2007. It didn't seem to bring any improvement, so I quit getting the treatments. I am doing OK, as long as I don't get hot or walk or stand too long. I am now living in the Pacific Northwest where it is cool and I am only working part time. I have some balance problems and some coordination problems, but otherwise function pretty well.
How are you doing?
Quote:
Originally Posted by Granacki
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?
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