I was diagnosed with Anti MAG neuropathy in February by Norman Latov in NY after being unsuccessfully treated with IVIG for what my original neurologist thought was CIDP. I have had one round of Rituxan that finished in April and feel that it is no better, possibly worse.
We think mine started 8-9 years ago and first showed up as what was diagnosed at the time as Bells Palsy, with left side of face effected and never recovered. Have worsening numbness, tingling and strange sensations in my feet. I walk 3-4 miles a day, still work as a nurse and play golf, walking 18 holes. My feet are definitely worse after walking but can't help but think staying in the best possible shape is advantageous.
Keep hoping for new research into treatments but so few people with it there seems to be no push for it.
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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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