Dr Allen Weiss

Thanks wbdophin, I used to be with dr. Weiss. Left him after ended up in the hospital twice. He was not aggressive enough with me. Also, he is in St Petersburg. I used to work there. I do not work anymore and I live in Pasco Co. My recent doctor and his partner figured me out and managed me for years.
Thanks anyway. L

My recommendation is not to seek out a doctor but a medical system where you can get all of your care from family doctor to neurologist. A great deal of the battle to get good MG treatment is having all of our doctors able to communicate freely and often with each other.
My own choice is Mayo Clinic in MN. Every medical record I have is on the same computer system whether I get my care at the main Rochester, MN site or the local Wisconsin branch. All of my doctors (neuro, sleep, endo, family, ortho, etc) pick up the phone and call each other, often while I am in the office.
With coordinated care at all levels within the same institution, everything is efficient, clear, and all are on the same page.
Where can you get this? University hospitals, Cleveland Clinic, Mayo in FL and other larger systems where you can have all of your care.
My drive is 3 hours to Mayo, but I wouldn't trade that for any thing else.

Good Luck
Russ

I see Jerrica Farias ARNP at the USF Health Morsani Center on USF Laurel Dr. in Tampa. She is very knowledgeable on Myasthenia Gravis. Never feel rushed. Sometimes doctors make you feel like you have to get all your questions out in 30 seconds or less.

At this time I’m in a study in the same building for Argenx.

Hi Debbie. Slightly off-topic, but I saw last night on Argenx's website that they have submitted efgartigimod for FDA approval. I am seronegative refractory gMG currently being maintained on prednisone and PlEx every 10 days. My neurologist said that efgartigimod is a possibility for me after it is approved by the FDA. Since efgartigimod seems to target the immune system in a different place than other immunosuppressants, I am hopeful. Fingers crossed.

Nanosecond

Yes I believe it has. I have been in the study for almost 2 years. It is a infusion for one hour once a week for 4 weeks. As of last June I have reached the part of the study where I may receive the medication when I feel I need it again. That’s for 2 years or till FDA approval. For me the four infusions are lasting 2 to 3 months. I was able to reduce my cellcept from 3000 mg a day to 2000 & may be able to reduce it more.

I was seeing USF Health because they are connected to TGH and all my records are accessible to everyone. I saw Jerrica Farias for my MG there and she was very kind and always addressed my questions or concerns. Dr Vu would come in at the end and provide his review as well. However, it wasn’t until I changed to Dr Brody Henkel at Neurological Specialties that I found out USF never had my MG under control. I was never treated with immunosuppressants. I am doing much better with Dr Henkel. Highly recommended. He is very knowledgeable of my MS as well as MG.