Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 04-15-2018, 07:32 PM #11
AnnieB3 AnnieB3 is offline
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AnnieB3 AnnieB3 is offline
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Absent ankle reflex? Well, if the doctor thought that was part of MG, they would be mistaken.

I have hyporeflexia in my arms. That is probably from my B12 deficiency. Usually the cause is from nerves, not muscles. Same with the absent reflex in the ankles. Unless you have some kind of injury, or are over age 60 (which is rather a non-scientific way to look at the situation).

I've only known one person who had both MG and MS. Don't even want to wish that thought on you!

Guillain-Barre is the only other thought, but you'd be much worse.

Can you find a neuro-ophthalmologist to see? I highly recommend that, in addition to finding another neuro for a 2nd opinion. I can't say enough about Dr. Weiss and his colleagues. They also have MDA days, where appts. are free. Dr. Weiss is a MDA Director. Mayo is a bit farther away (Jacksonville). But they are such a huge organization and you often have a resident without much experience see you first. Although, they do have more experience in testing for neuropathies. Finding out exactly what is going on, whether that's one condition or more, is very important.

You are your best advocate. You are obviously smart and savvy. Trust your instincts and I'm sure you'll have this figured out soon!

Annie
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Old 07-11-2018, 06:59 PM #12
rosepointe rosepointe is offline
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You mentioned that you are in Florida and moving to the East Coast...not certain where but I wanted to add that there is an excellent Neuro -Op in S. Florida (Ft Lauderdale West Palm area) Mathew Kay. He diagnosed me on my second visit (as I was not showing classic signs on the first but showed with drooping eyes on the second) and we were waiting for MRI results. He treats Myasthenia patients.
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