Wondering if anyone's been to Mayo Clinic in Rochester Mn and which doc they've seen and been pleased with. I've tried to self refer there twice to neurology and have been declined. My PCP says he will refer me, so was curious about physicians there.

History: I've seen two neurologists. One ruled out MG based on AChR alone. The current one started a Mestinon trial (which is working) but who will not give a dx of MG if the SFEMG is normal (haven't had that yet).

I did call the MD chapter and ask for an MG specialist name too. See what that turns up.

Mestinon is one of several therapies for MG. You need to be given Immune Globulin by IV. I don't know why doctors are so scared of prescribing it. I've given over 100,000 grams IV with no problem. The side effects are rate related and most infusion suites infuse it way too fast. Check to see if there is a specialty pharmacy in your area for IVIG and ask the nurse manager for a doctor. In what state do you live?

NCRN,

First off....welcome. I read one of your responses (about IVIG rates etc.) and was impressed. I'd like to pick your brain on IVIG.

I have had my MG dx now for about 3 years - and searched for that dx for about two years before that. I would describe myself as a 'stable' MG'r - if there is such a thing, and have only ever used generic Mestinon for treatment. My neuro has offered pred and Imuran to attempt remission, but I have refused both. IVIG has never been considered, though it has been mentioned as something that would have to be done if I ever crashed.

I consider my quality of life to be acceptable with the 180 - 240mg of Mestinon each day. I'm kind of funny when it comes to serious medicines and therapies (like pred, Imuran and the others, IVIG, plasmaperesis) and prefer to avoid them until unless I can be convinced that they are absolutely necessary.

Do you think I am limiting my improvement because I only take Mestinon?

Hi NCRN,
I live in Wisconsin, but am right on the Minnesota / Wisconsin border. The Minneapolis / St. Paul area is close by.

I agree about IVIG. I ended up in a myasthenic crisis (not requiring intubation) on Monday night with breathing and swallowing difficulties, and ptosis of the right eye. My local clinic saw me and wanted to admit me for observation, but said that they were limited to 'observation' at that hospital.

Right now I am working through my local U where I was a patient in their neuro dept and asking them to provide the referral to Mayo.

Hi, sorry Mayo wouldn't let you see them without the referral. I had the same issue, but my doctor did refer me. I have auto-immune problems and saw them in 80. Never forgot the experience. They were wonderful to me. If you want to get to the bottom of what you have, they are indeed known for their diagsostic abilities. I wish you all the best. ginnie

I was just at Mayo....I saw Dr. Milone and was fine with her...she has a lot of publications out there and is quite experienced in MG...not sure if she is the BEST but she is a Neuromuscular specialist. I was refered by my doctor. I hope you get answers soon.

Darci