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?

Originally Posted by jrip

My husband has had this type neuropathy for many years. He's now 76. Luckily he has no pain, mostly numbness esp. in feet. Recently (the past year) developed balance problems and walks with a cane. We tried the Rituxan infusion that has helped some, but it benefitted him hardly at all.
He has no problem bicycling and it's good exercise.

Originally Posted by EDELSTEP

My husband had this type of neuropathy dx at 65 has had symptoms for 3 years. Luckily he has no pain, numbness in feet. Recently developed balance problems because of weakness in R foot. We are trying to get the Rituxan infusions but insurance does not want to cover our doctors are trying to write letters of medical necessity to the insurance company. Still waiting.
How did you get your approval for your infusions?