I was diagnosed with anti-MAG neuropathy 7 years ago (at the age of 45). It wasn't until I saw a neurologist at the University of Iowa Hospitals that I received a diagnosis. It took about 6 months from the time I saw the first neurologist until I found one who knew about the condition. I was started on IVIg and had good results initially. After 6 years, the IVIg doesn't seem to be helping so I have stopped. Since moving from Iowa I am now going to a neurologist who hasn't treated anyone with anti-MAG before.

My balance is pretty good as long as I think about what I am doing and don't rush. My legs aren't strong anymore, but I can walk pretty well. If I am on my feet too long, my feet go completely numb. I am rather clumsy with my hands - drop things and can't coordinate fine motor movements. My feet burn terribly when they get hot. Now that I live in a cooler climate, my feet feel better.

That's about it for now. I hope there are others who can share their stories. Not too many of us around - I don't know anyone else who has this disorder.