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


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Old 10-05-2016, 01:27 AM #11
rMuD rMuD is offline
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Other Muscle Symptoms. After working out I typically schedule my chiropractor appts. The muscle weakness in my legs are at the point my legs shake as in misfiring. Just assumed it was normal.

They did OT for Carpal Tunnel last year on my Hands: First visit they did strength tests on my fingers/Hands at the beginning of the visit. Had the Strength of a 26 year old. Second visit, she forgot and did it at the end of the session, I lost 20% hand strength in two weeks.
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Old 10-10-2016, 08:42 PM #12
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Cleveland Clinic Visit last week did not seem very promising for many answers. It was typical neurological visit. test standard reflexes, take history. Said CN4 Palsy was not typical for MG, the negative anti-bodies blood test. So he was not sure. We re-did blood tests, added anti-musk even though he said anti-musk is only african-women. Added single fiber EMG. to make 100% it was not MG. Was told I would have to wait 53 days for a single Fiber EMG. end of November.

October 10th today (5 days, not 53).. I had the Single Fiber EMG on the Orbicularis Oculi at CCF. The Muscle was fatigued badly about 3/4 of the way through the test, was told he had enough data, asked if I had any Botox, etc.. would let my neurologist know this evening. Waiting on test results. No idea what that means. I know towards the end, I was sqeezing my eye closed much harder, and it was jittering I was struggling, not tired or sore, just more difficult. But that could just mean what frequency he was on at the time.

Inability to smile seems to be genetic, my brother can not smile either, nor my son. Maybe I am smiling, or recruiting, just the corners of my mouth just do not go up. 23andme genetic test sent out in the mail today.
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Old 10-11-2016, 11:01 PM #13
AnnieB3 AnnieB3 is offline
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Good!!! So maybe now you can have some answers!

Usually if they stop the SFEMG, they found evidence of something. They would normally do a bunch of pairs of muscle fibers. And usually they do the forearm muscle as well as one by the eye.

It sounds as though your muscle was fatiguing, which is typical of MG (or CMS).

It's possible that you have either genetic MG (autoimmune) or one of the congenital myasthenic syndromes (it's not autoimmune, but a genetic mutation).

Uh, the MuSK is not only African-American women. Absolutely not.

You should hear soon from the doctors. I really hope you can have the appropriate treatment soon, both in terms of medicine and kindness.

Annie
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Old 03-30-2017, 12:38 PM #14
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I should have come back sooner. I still have not found a doctor to give me the actual data from the SFEMG. But the written report says negative.

Just saw the Neuro-Ophthalmologist last week for the 6 month checkup for the CN4 palsy. He has not ruled it out but my symptoms are not bad enough to put me on medication.

I switched medical systems on him to see the neurologist because of billing issues. If things start to get bad, I will get to the ones through the medical school that work with him this time.

Anyway. I am going with no MG! which I am taking as a positive. but the delayed muscle fatigue, will just go back into the filing cabinet of WTF! keep an eye on the brain for lesions, and more MG like symptoms.
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Old 04-11-2017, 12:46 AM #15
AnnieB3 AnnieB3 is offline
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I'm sorry that you don't have solid answers yet. Don't exclude MG just yet. Seek out a PCP or neuro (or hospital) if you become worse!

Annie
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