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...

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Muscles & Bones
/ Myasthenia Gravis Support Group

Anyone else see Dr. Weiss?

Hetheric
Hetheric
I got into Dr. Weiss in Tampa rather quickly. Anyone else have experience with him? I see him Monday.
wbdolphin
wbdolphin
I don't, but I know a few that do and they absolutely love him. He spoke at our local support group meeting earlier this year and I found him to be very thorough, personable and caring. The support group meets every other month at ORMC, don't know if you've been yet.

Lisa
Hetheric
Hetheric
No, but I would love more info...
wbdolphin
wbdolphin
It meets the second Saturday of even months, at 10 am, at ORMC. I believe there is not one in August due to vacations/heat?

For additional information contact David Dorr at 407-273-9864 or mymgorlando@gmail.com.

Lisa
Hetheric
Hetheric
Thank you!
wgreen19
wgreen19
How did your first appointment go?
Hetheric
Hetheric
Wonderful!! He was very thorough....went through my records. Showed me the mistakes they had made at other places as far as not testing enough or the wrong muscles during thevEMGs. He confirmed the diagnosis of MG. I was the 5th myasthenia he had seen that day. He was very knowledgeable and supportive.
He connected me with a local support group and adjusted my mestinon to every 3 hours. I see him in 3 months to see what the next step is going to be.
artistmommj
artistmommj
I saw in previous posts that you are having breathing and swallowing difficulty. Are you going to be okay on mestinon alone? I am just concerned that your follow up with Dr. Weiss is three months away.

Mine started that way--breathing and swallowing difficulty and it was my primary care doctor who called 911 while I was at her office. I was seeing her for my symptoms and suddenly felt really weak that she decided I had to go to the ER. I ended up in a crisis which led to my diagnosis at the ER. I was quickly admitted and given PLEX, mestinon, prednisone and IVIG, then two months later a thymectomy.

Just concerned.