Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hello,
I am looking for a neurologist/MG specialist in Orlando, Florida or the surrounding area. I looked on the Myasthenia Gravis Foundation of America website and they only list 4 neurologists in Florida. None in Orlando. 2 in Jacksonville, 1 in Miami and 1 in St. Pete. This is extremely frustrating. I have a great neuro-Opthalmologist that specializes in MG. He and his team have already confirmed my probable seronegative diagnosis and have fitted me for prism lenses. I just got them today. I was unable to drive for 2 years due to diplopia. I have seen 2 neurologists and I am extremely frustrated with them. I don't feel they are on top of their game and one of the neurologists has a problem with running extremely late, 1-2 hours waiting time. He works half his time in his affiliated hospital. I have been on mestinon 90 mg every 3 hrs for the last year. I need to start treating the disease. I have issues breathing, diplopia, issues with esophageal dysphasia, weakness in my arms/legs and unrelenting fatigue. My primary told me I am prediabetic so steroids are not an options. I have done all the research and have read all the books on Amazon about MG. I know my next step is probably an autoimmune medication. I've had some pretty scary breathing episodes and a severe flare-up this past spring. I was bed ridden for 10 days and it took me 2 months to get myself back. That was an eye opening experience!! Not fun and you wonder how you'll make it.
Anyway, if anyway can suggest a neurologist in the Orlando area, it would be greatly appreciated!
Thank you all! ❤️❤️
Robin
I had all of my doctors at the Mayo Clinic in MN where I had a primarily and several specialists including the neurologist for MG. Mayo is different than most places as all of my doctors worked as a team to figure out the treatments i needed (I had some other problems too) They were all on the same computer system and could look at all of my tests and clinical notes, as could I.
My Mayo neuro was 3 hours away, but we used the electronic messaging system to communicate almost weekly during the first six months of MG when I needed support. The Mayo system sprawls through the midwest so I was only 1 hour away from my primary doctor who talks to my specialists as needed.
It is a great luxury for all of my doctors to be in the same system and talking to each other and doing a team effort to keep my health under control. I think there are other large integrated systems through universities or like the Cleveland Clinic that operate that way too.
Good Luck Russ
You need to be careful. My friend also had diabetes and his first doctor told him the same thing about prednisone. His mg problems never improved. He finally got so tired of mg he changed his diet and improved diabetic situation. His first doctor told him no prednisone because of diabetes. He finally got into my doctor and went of Prednisone and got his life back.
Truthfully prednisone to us is like glasses for the nearly blind or hearing aid to nearly deaf.
We have to have it.
When I first had mg I didn't want to do prednisone as it was recommended. Ended up in crisis, and on ventilator. it was horrible. Then was on 60 of prednisone which is so high its crazy.
My friend needed to get to neurologist who would put him on prednisone and cellcept and follow a diet to help prediabetes.
If I would have gone on prednisone earlier , I most likely would have no had to go on ventilator.
Time is important here. I drive hour and half to get to neuromuscular specialist and well worth the drive. My husband takes me. Breathing issues can get very serious very fast.
He finally went on prednisone and got his life back. He was amazed at improvement.