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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HERE!...
Well, I'm making my second trip to the hospital for my second in 4 months multi-day neuropathy drip, the admitting doctor indicated in our discussion my diagnosis of "anti MAG neuropathy" (to coincide with my mono clonal gammapthy. He Goggled the subject on my laptop - and I saw your post. One in the same issues Granacki - like listening to myself...same age (60), same almost everything. If this [2nd] 4-day treatment doesn't work...then there is a [dialysis] form of treatment which as described to me "replaces (someone elses) protein serum for the anti-MAG one I/we have." SO, one (painful) step at a time. It's all very frustrating, debilitating, and painful by the day. But I have resolved to keep walking (every other day as you for recovery minus my summer mowing), using my Bowflex every other day for strengthening, and hopefully we'll see results this [last] time around before we get into what my neurologist calls the "invasive" procedure I mentioned above. Also, had the scare where my N-Dr sent me to hemolotolgist/oncologist because of the mono clonal gammapathy of "unspecified origin," which could - or not - be associated with my neuropathy...and potential for or cause of bone/blood cancer(s). Negative, with Anyway, keep heart. Reply an/or email, we can either commiserate or see if we're both experiencing likewise issues and what one might be doing.
Good luck.