It took a year of testing before I was diagnosed with MMN. It is correct that MMN patients will respond to IVIG and that is how the disease is determined 100% and is not ALS.

The testing I had done was several nerve conduction test, several emg tests, both of which are not pleasant but rather painful. I also, saw a back specialist who took x-rays to no avail. I also a spinal tap or lumbar puncture done and one other test involving putting die into my spinal cord. All this tests were awful, costs tons of money, but at least I do not have MMN and it was caught early. I was diagnosed with MMN four years ago and have been receiving IVIG treatments of 90 grams every five weeks.

Today I saw my doctor and he did not like my status so I will be getting 110 grams every three weeks now. The treatments for 90 grams is billed to my insurance company at $30,000 per treatment. I went through almost all of my $1,000,0000 in almost four years. Now my policy will expire on December 31, 2014 and am already having trouble getting a new policy.

I had Anthem Blue Cross Blues Shield and submitted an application to them two weeks ago. When I called yesterday to follow up with them they said my application was lost. Right. I have also applied on the federal health care exchange but have not got a response back. I will be applying for Coventry insurance here in the next day.

Not sure this helps it all, by the way I live in St. Louis, MO. I hope more people start becoming aware of this awful and rare disease and it gets more research done by doctors and scientists looking for a cure.