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Old 09-14-2009, 01:51 PM #12
NancyKay NancyKay is offline
Junior Member
 
Join Date: Feb 2008
Location: Lummi Island, WA
Posts: 41
15 yr Member
NancyKay NancyKay is offline
Junior Member
 
Join Date: Feb 2008
Location: Lummi Island, WA
Posts: 41
15 yr Member
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Quote:
Originally Posted by NANCY W. View Post
Hello. Your symptoms and mine are very similar and I am getting help now and seeing improvement. I was diagnosed 10 years ago with monoclonal gamopathy and noone suggested treatment. So I got progressively worse - all the symptoms you mention and getting harder to walk (and a few falls and tripping over my own feet). Finally saw a neurologist who after many fancy blood tests, diagnosed me with antiMAG and put me on a regime of plasma exchange (plasma pherisis). That was 4 months ago and I am seeing improvement - not huge dramatic improvement, but I am walking better and I believe I have more feeling in feet and legs. The same neurologist is now suggesting Rituxan - don't know if I will do this or not yet.
Hope this info helps you to know that there is new information out there and I hope you can also find some help. REgards, Nancy W.
Hi Nancy W,
I was diagnosed with anti-MAG neuropathy 7 years ago. I have tried IVIg (with improvement initially) and numerous oral medications. I would like to try Rituxan, but my insurance won't cover it. I am currently going down to Seattle to see a neurologist at Virginia Mason. Not sure if he will have anything new to offer, but at least he has taken care of others with this ailment. How are things going for you?
Best wishes,
NancyKay
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