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?

Originally Posted by Annee

I'm new to this site - don't quite know how to use it! I've just been diagnosed with anti-MAG neuropathy. Neurologist tells me it is quite rare, usually hereditory. My next step is to have a work-up with hematology, possibly a bone marrow biopsy. I have tingly and numbness in toes, seems to have progressed in the last two years to ball of foot. So far I'm able to function normally, walk my dog every day, go to gym 3/week. It is more of an annoyance than painful. Am anxious to get tests from hematology.