I just spent the last week ay Mayo in MN getting poked and prodded. They concur with the MMN conclusion, though the doc did say they can't be definitive without observing for months or years. He's recommending doubling the IVIg dose I was getting, which I regard as a positive result: My doc at home has no experience with MMN (despite working at the Univ of Utah, not a small population), where the Mayo sees as many MMN cases as anybody else, I believe. My Utah doc was considering plasmaphoresis or cyclophosmamide next, both of which sound pretty scary.

As for how people respond to IVIg, Dr. Jones (Mayo) said you don't generally get reversal of current damage--what is hoped for is to stop the progression of the disease. I could live with that--so far having lost extension of 3 fingers on my left hand, have some weakness, etc. Thankfully I'm right-handed.

It's kind of discouraging to have so many (well, relatively) responders here say that the IVIg didn't help much.

I also had a lessening of fasciculations and cramps with the 5 months of treatment just concluded. Can anybody else share their experience? Maybe this forum is self-limiting to patients still seeking answers, and those who do experience successful results tend to not follow the forum?