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Old 11-18-2011, 03:27 PM
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
Default Anti-MAG neuropathy & Rituxan

I've been diagnosed with Anti-MAG neuropathy for about 10 years now. It has been slowly progressing with increased numbness in feet & lower legs, balance problems, decreased coordination in my hands, severe Restless Legs Syndrome, muscle cramps in my feet & legs, and decreased stamina. I am still working part-time doing office work (getting hard to keyboard and write), and some volunteer Parish Nursing.

I was first diagnosed at the age of 46, and I'm female, so I am also an oddity. IVIG helped for about 5 years, but then was not very effective, so I stopped getting the infusions.

I found a wonderful neurologist in Seattle at Virginia Mason Medical Center (VM) and just had my first Rituxan infusion yesterday. I was surprised that my insurance covered it - finally. I will be getting 3 more infusions a week apart. The infusion was done at the Outpatient Infusion Center at VM and all went well. When I got home I had some fever/chills, and this morning I felt weak, but am feeling better now (several hours later). I am hoping that Rituxan will be beneficial.

My advice to anyone living apart from a large city with a teaching/research hospital is - you must go to a neurologist who has seen & treated this rather rare condition in order to be properly diagnosed and treated.

I'm very thankful that it is SLOWLY progressive!

Blessings to all of you,
NancyKay
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"Thanks for this!" says:
Zaphodbeeblebrox (12-23-2011)