Hi Jennyd1230. I'm sorry it's your dominant hand.

IVIg: the only side effects I've experienced have been some headaches. Having them slow the infusion to 150ml/hr helped a lot. This made for 9-hour sessions at my earlier dose; I brought lots of reading material, and thank goodness for iPads. I did have a night of throwing up after my initial, 3-day course of 2g/kg. On the bright side, after a week I noticed quite a lessening of twitches and cramps, which then came back two weeks later, so we tweaked the treatment schedule to every 3 weeks, one day, 1g/kg. After 5 months that positive effect waned. Then I took 2 months off (waiting for Mayo results) and the Mayo prescription was twice the IVIG monthly, but split into more frequent treatments. Sadly, now I notice no improvement in twitches and cramps, and headaches are more easily triggered--for instance if I have more than 1 glass of wine. However, since I haven't lost the use of any more fingers, I hope the IVIg is helping. I lost my left thumb extension last April, index finger in May, then IVIg started, lost half a pinky in August, and none since then (knock wood).

The Mayo doc told me the IVIg mostly prevents or slows the progression, rather than reversing it, which would still satisfy me, though as a result of the MMN I've now developed tenosynovitis in my left thumb which *does* hurt, and now I'm wearing a splint to try to improve that. Adding injury to insult, as it were.

I had weeks of sleepless nights worrying about the money, till my insurance decided to cover the treatments. It turned out to be a silly technicality that was slowing things up. All I can say is, don't hesitate to jump into the breach if one party or another is dragging their feet. I am sooo thankful that the new health care bill took away annual and lifetime caps on coverage--it definitely affects IVIg!--and sooo worried that the bill's opponents will manage to repeal all or part of it. I'm self-employed and have to buy my own insurance, which is now up to $950/mo. for me and my son, and I have to be able to keep working to keep paying the premiums. I still worry that someday it might come down to a choice between treatment and, say, my family's home. I have 6 years to Medicare. I wonder how Medicare does with IVIg...

I'm now looking into a ketogenic diet to see if that might help, in case the IVIg (or insurance) fails. Are we allowed to post links here? I started with a New York Times article titled "Epilepsy's Big Fat Miracle" (you can google it up) and started googling around based on things I read in the article. Keto diets are a proven, amazing sometimes-even-cure for epilepsy, and research is now being done to see how it might affect Parkinson's, Alzheimer's, and all sorts of stuff. It appears to confer protective effects on the nervous system, and that's just what we need in MMN.