Junior Member
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Join Date: Feb 2008
Location: Lummi Island, WA
Posts: 41
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Junior Member
Join Date: Feb 2008
Location: Lummi Island, WA
Posts: 41
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Not to cause more confusion, but I also have anti-MAG neuropathy (another Nancy!) and have been diagnosed for about 9 years (when I was in my 40's). Initially I received IVIg infusions (for several years) with limited improvement of my symptoms. I moved to the Pacific Northwest, and have been seen by a neurologist in Seattle. My insurance doesn't cover Rituxan (considered experimental for this condition) and was offered chemotherapy. I'm not ready for that so I have just been going along with symptom control (Cymbalta, neurontin, acetominophen, ibuprofen, antihystamine sleep aid). I continue to look for clinical trials using Rituxan as it's treatment arm, but nothing so far. It is helpful to hear what others are doing, around the world. I have burning feet (after walking or standing), sensory abnormalities, unsteady gait, fatigue, restless legs syndrome and weakness of leg muscles. Thanks for all your posts. Lets keep eachother informed!
NancyKay
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