Steph, That's actually not a simple question. The "largest" institutions who have the most research and resources available are places like Mayo, Stanford and Johns Hopkins - and the Cleveland Clinic - but does that mean they would be the best for you?

And that begs the question: What is a good MG doctor? I have a neurologist who is not an MG expert but is an amazing person. He listens and we discuss my situation. We are honest with each other and I trust him. He is super smart, which is always helpful. And he's willing to learn more and has.

As far as Florida goes, the doctor who diagnosed my MG is Dr. Allan Weiss of the St. Petersburg Neurology Clinic. He studied under Dr. James F. Howard, Jr. of UNC, who is also amazing in every respect. I went to him because someone from another MG forum referred me to him. I'd been mistreated by the MG "expert" where I live and felt it necessary to seek out another expert. While that was a great experience, after a few years of spending money and energy I didn't have, I still had to find someone to care for my MG in my own state.

It might be worth your time to seek out a 2nd opinion from Dr. Weiss about your treatment options, etc. He is an MDA Director too and you might be able to schedule an appt. on an MDA clinic day. He can very intelligently discuss your situation, what the treatment options really mean and come up with a reasonable plan for you. He is the neurologist and MG expert I respect the most. Then you can bring that information back to the local neuro you really seem to like and decide how to proceed.

When you have MG, you really have to think about things in a long-term way. Traveling somewhere for on-going treatment from a doctor is exhausting and it might "tick off" your local docs if you do that. It might tick off your MG too. Believe me, I know. Some neurologists are so easily offended.

And no one else can or should decide for you what you want to do! What do YOU want? What would make you feel reassured and confident in a plan for your MG?

MG sucks. There's no other way to say that. And life with it can be okay or horrible or somewhere in between. And it can be all of that for ONE person. You need a team - including a very good pulmonologist and internist - who you can trust! Evaluating MG takes more than a neurologist. A pulmonologist needs to do at least a yearly evaluation of your breathing. And they are the doctors who manage a breathing crisis in a hospital setting, along with the neurologists. Since your goal is "living well with MG" then you need to keep your doctoring and its related stress to a minimum!

You may have to decide, at some point, that being a part-time lawyer is all you can do; temporarily or not. So thinking about things like having short term disability insurance is a smart action to take. I personally think doctors are conservative with a lot of patients due to their fear of hurting them and having a subsequent lawsuit!

Whatever you decide, you have to be happy with that choice. And I think rising sea levels might be more of a threat to you in Florida than the neurologists!

I have to add that managing MG has as much to do with common sense as it does with doctors and drugs. Alternating activity with rest, not pushing your body, nipping infectious in the bud, getting enough water, sleep and healthy food, etc. is as important as having a good doctor. It's a lot to think about, so give yourself some time to adjust! You too, Kathie.

All my best,
Annie