Quote:
Originally Posted by NANCY W.
Good morning. I am brand new to neurotalk. I have the anti-mag syndrome and am trying to work my way around this site to get and share into. Are you still posting? Will appreciate hearing from you. Nancy W.
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I'm another one with anti-MAG neuropathy - diagnosed 7 years ago. Was on IVIg initially with good results. After about 4 years, it didn't seem to be helping with the symptoms any longer. I have trouble walking for very long, especially in hot weather. My feet just burn and feel terrible. Thus, I don't walk as much as I used to. My balance is poor - I really need to think about what I'm doing or I loose my balance and fall. No more running around in a hurry. I just started seeing a new neurologist in Seattle (Virginia Mason Hospital) and need to decide what kind of treatment to start. I would like to try the Rituxan, but my insurance isn't keen on paying for it. I am 54 years old and worry about what my future holds. I had an uncle die of Waldenstrom's Macroglobulinemia - so I worry about that as well. Would love to have some dialogue with others who have anti-MAG neuropathy as I feel alone.