Junior Member
|
|
Join Date: Feb 2008
Location: Lummi Island, WA
Posts: 41
|
|
Junior Member
Join Date: Feb 2008
Location: Lummi Island, WA
Posts: 41
|
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
|