I just got off the phone with the Mayo clinic in Minn. and they did just what you said... after realizing that I said "multifocal motor neuropathy" and not just neuropathy they said to treat me the sooner the better and i willl be making my way up there Monday. I need to make arrangements but I was surprised to get the help so promptly. Thanks.
Quote:
Originally Posted by twitchyfirefly
First of all, when MMN is suspected, they usually try IVIg (immunoglobulin); if you see benefit, then the MMN diagnosis is likely correct. IVIg only helps in about 70% of cases, however.
I have found that with an MMN diagnosis, all you have to do is call the Mayo Clinic neurology department, tell them your diagnosis, and they will get you in fairly quickly. That's what I did, and it did not even require a doctor's referral. I related this story in a forum devoted to MMN, and subsequently one or two other people had the same experience.
MMN is very rare, and most neurologists have no experience with it. That's why I went to the Mayo Clinic — they see as many cases as anybody. Even so, when I asked my Mayo Clinic doctor how many MMN patients he sees in a year, he said maybe 12.
I would urge you to search out the MMN-dedicated sites online (we are not allowed to post links here, but you can find them with Google) and ask for advice there, from the many many people who have been down a similar path. There are two Facebook groups and one standalone forum.
|