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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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Hello. I am an antiMAG person too - diagnosed 10 yrs ago with monoclonoal gamopathy but was never offered any treatment until this year. Slowly it got harder to walk, balance got worse, etc until I insisted on seeing a new neurologist. Was referred to Oregon Science & Health U & Hospital. Good news - I've been on plasma pherisis for 4 months and have seen steady (if slow) improvement in my walking and steadiness. Have had total of 13 apherisis treatments given through a subclavian port, which is not a very handy thing to have (no showering, swimming, kyacking, etc) Neurologist at OSHU/Hospital now recommending treatment with Rituxan but is leaving the decision to me. I'm thinking I may stay with "the devil I know" and have a fistula installed in my arm for continued pheresis treatment. I will certainly be glad to hear from and any others with ANTI MAG experience.