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?
|
Hi. I was diagnosed with this disease in 2005. I was told it was an old person's disease and my labs were way off the charts. I could hardly move my legs and arms. I am being treated at OHSU with rituxen infusions every 12-18 months. My results have been excellent. I have returned to near normal but can tell when I need an infusion because I begin to get tired. Of course I have the tingling if I have weight on my arms and over time, the tips of my fingers and the bottoms of my feet are less receptive to touch. But when I was first diagnosed, I couldn't even type, or even hold a pencil. For the most part, exercise really helps and so do massages. Lots and lots of massages. My disease is being well managed.