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?
|
I have been diagnosed with anti-mag antibody about 1 year and 1/2 ago after 9 months of dr appt and tests. I went as long as I could With out pain meds but it got to the point that I couldn't stand anymore, felt like I was walking barefoot on hot sharp pebbles, I am currently taking nortriptyline used for nerve pain, it has helped tremendously I can get by day to day, im still limited if I over do it which before this was considered normal for me I am in pain by evening and usually the next day. But I do not think I would be walking with out it. I am being treated with rituxan, I do not know if it is helping or not. My numbers are up and down. Im on maintenance every 2 months, in November they dropped significantly, today they tripled from November. Dont understand. Other then nortriptyline helping the pain I dont feel anybetter. Do not know what future hold or what to expect by the treatment of rituxan long term. I just get told its so rare no text book way of treating it or knowing what causes it :/
