Hi Island Lad

I do not know what's available in Gainesville but I am sure that there are resources available in Orlando. One member over in the Orlando area wrote me and informed me of a monthly MG support group meeting as well.

Good luck with your search but make sure and find someone who is going to take an interest in the problem and work with it.

I live about 2 hours south of you and I went for my first "neuro specialist" visit to USF in Tampa yesterday. It was a good experience though as the new neuro has dealt with a lot of MG cases. She spent a good amount of time going over my case with me and she has set a forward path starting me on imuron and IVIG infusion.


Good luck and you are not alone out here.

Steelplayer

Hi Steelplayer,

Thankyou. I'd be willing to go to Tampa. Would you share the Dr. information please.

If you live near university hospital they tend to see more cases since other drs send pts there for more comprehensive treatment.

Hi Island Lady

I believe that I have your screen name written correctly this time. Sorry about that.

The specialist that I went to yesterday is located at USF in Tampa. The doctors name is Hera Stephens. The one problem with seeing an out of area specialist in this case is that they admit the patient to Tampa General for any "in patient" treatment like IVIG infusion.

I had been going to just a local neuro who tried to control my situation with increased levels of Mestinon and Prednisone. When that did not pan out, they referred me to an advanced specialist as MG was something that they only wanted to treat to a certain level.

Good luck with your situation.
Steelplayer

Didn't think of that.... ok, thank you..... I guess I could go out of town and let that dr. communicate with my GP...?.... ok, figuring out thank you.

I go to USF in Tampa. Dr. Lara Katzin.

Thanks so much!

The Myasthenia Gravis Foundation of America at myasthenia.org lists several Florida neurologists on their Physician Referral List and several MG support groups around the state

Thank you!

Island Lady, Shands in Gainesville has one neuro who works only two afternoons a week. I did not bother seeing him as it would be too difficult to get ongoing apps with him. He works with veterans at the VA hospital at other times. So no one really specializes in MG in Gainesville. I've heard no good reports from Mayo in Jax. Dr. Gooch in Tampa and Dr. Weiss in St Petersburg are associated with Myasthenia Gravis Association. They may be worth a try. Perhaps they can then refer you to someone in your area. This forum may provide some other recommendations. You will find this forum your most valuable resource for accurate information. May you find the answers you seek!

LadyIfe, thank you, supposedly, the Nuero group at shands has 4 drs. now specializing in MG, but they are not accepting new patients...they've said they are trying to add mr drs... so that is hopeful for future ;-).... agreed, already this group has been invaluable.

Just as an add on

Dr Gooch at USF is very highly rated but he only sees patients one day a week and he is really booked up in advance. That's who I originally tried to get in with. I ended up going with Dr Stephens and my first visit went well.


I'm trying to get set up for the IVIG infusion at a local hospital in my area so that I don't have to drive down to Tampa every month, going forward.

I didn't realize that IVIG infusion took so long to perform and then it also has to be pretty much repeated every month afterwards.