Originally Posted by NancyKay

Hello Zaphodbeeblebrox,
I have had anti-MAG peripheral neuropathy for at least 10 years (having been diagnosed at the age of 46). Still walking, but definitely have balance issues so I go slow and hold on to railing, etc., and am especially careful if it is dark. I have tremors in my hands, so writing & keyboarding is difficult. Significantly less energy, leg cramps are sometimes quite bothersome, bad restless legs syndrome too. I started out getting IVIG infusions, which seemed to help for a while. Just finished a round of (series of 4) Rituxan infusions (finally approved by my health insurance) and am awaiting results and hoping for the best.

There is a lot of information on the internet about anti-MAG, some which can be pretty technical, but I would suggest that you start there. It will give you a better understanding of this autoimmune disorder. Briefly - this condition is rare - mostly seen at larger research medical facilities. No known cause, which is the case with most autoimmune conditions. It was first discussed in the medical literature at least 30 years ago. Prognosis - very slowly progressive for most people. Not an exact answer, but it varies. I have had it for at least 10 years, and most people don't know that I am not functioning at 100% - unless they see me bump into things or fall, which I do if I'm not careful, go too fast, or get distracted. There are certainly worse autoimmune conditions, in my opinion, but there is no cure for this currently, and progressive disability usually does come to us over time - 15-20 years or more? Google "anti-MAG neuropathy" and dig in...

Best wishes to you and keep checking for updates on new treatments, etc.

NancyKay