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Old 03-16-2010, 11:32 AM
NANCY W. NANCY W. is offline
Junior Member
 
Join Date: Sep 2009
Posts: 20
10 yr Member
NANCY W. NANCY W. is offline
Junior Member
 
Join Date: Sep 2009
Posts: 20
10 yr Member
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Quote:
Originally Posted by jrip View Post
I'm a 75 year old male and have had Anti-MAG demyelinating polyneuropathy for probably eight or nine years. It began with a numbness in my feet. I became aware of it trying to walk on beaches while hunting. My balance was poor. I began losing weight, mainly muscle. It was at this point that I was diagnosed with neuropathy. My neurologist put me on Cytoxin, which seemed to arrest it for awhile. Lately my balance problem returned with a vengeance.
I just returned from a visit to a neurologist at Virginia Mason, who told me after some tests that my neuropathy is quite bad. I walk now with the aid of a cane. He told me of a controlled study for Rituximab that concluded it is an effective treatment in patients with A-MAG-DP and suggested I consider it. Any benefits only last a year and, as one posting mentioned, it is so expensive I'm not sure my insurance will go for it. I'm trying to make up my mind whether to give it a try. Sometimes I have pain but for the most part the neuropathy's effect has been on strength and mobility.
Good morning. Seems like we have similar age (I'm 70) and experience with antimag neuropathy. I began to get symptoms of deadness in toes about 12 years ago, was diagnosed with perf. neuropathy and I wasn't offered any help or add'l info until early 2009. Over that time span my feet got pretty numb, and muscle problems began in ankles and legs (bad balance, hard to keep up with group on walks, etc.). In early 2009 I was diagnosed with the antimag thing at OSHU. They started me on a regimen of plasma Pheresis (removing all plasma from bloodstream and the antimag proteins with it) which I continued for 4 months.
It helped moderately with numbness in feet and weakness in legs. OSHU is now recommending treatment with Rituxamab -- I see the doctor today to find out about these treatments. I am wondering if medicare took care of payments for your rituximab treatments?? Or did you go ahead with it? I'll be happy to share my info/experience with this treatment and my condition with you and others.
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