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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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11-16-2022, 05:17 PM
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Legendary
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also...
Not sure if this is helpful or not as there appears to be different forms/types of mestinon but I came across the information that the half-life of 60mg Mestinon is 3 to 4 hours then I would wonder why you would need to be off it for a week prior to an EMG or SFEMG. It would seem to be very difficult to go off it for a week, 3 days or even 1 day. 
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11-18-2022, 09:51 PM
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The time off Mestinon before testing is what I have always been instructed to by neurologist and even my first older pulmonologist at Mayo who had experience with muscle disorders.. Mayo Clinic gives instruction sheets that include this. Even my poor local neuro did this. First time she tested me she put me in hospital the nite before so I would be safe going off it till test. Unfortunately I was aware it was risky. The situation so I personally asked my neurologist after the EMG that I would continue my Mestinon no matter the results. She agreed. When I went back to neurology floor and asked for Mestinon I got a slow walk from them. When I insisted and said my doc said OK a different neurologist came in and said no given results of my test. I had to keep pressing till I finally got shortly before I was to leave so I had to use a wheelchair. No it is true At this point I could be off Mestinon for that long. It’s the only thing that I have for sure to help my Oxygen levels and walking and just holding my head up.. Sculptor 44
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11-30-2022, 11:42 PM
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Thank you so much for info. Had a small miracle. I called my first doctor at University Clinics to see about an appointment. She is brilliant and loyal. But she takes months to get into. SHE would CARE about my Gammagard Experience in March. I was told she is leaving and even Iowa. Disappointed but not surprised as politicians are really hurting health care here. We lost a new young neurologist there a muscle person during Covid. So I called back today to leave my internist a message hoping for at least an idea for help. Her nurse called me back fast and offered a last appointment!!! I said how she has so little time. She said doctor had given them a few appointments to give out to special cases. It is Friday next week. Sculptor 44
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| "Thanks for this!" says: | Lara (12-01-2022) |
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12-01-2022, 05:22 AM
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Legendary
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Wow, that's such great news at last.
I hope it all goes well for you on Friday. Let me know how the appointment goes if you can. (health care a shocking mess in my area too. I could tell some stories, that is for sure) |
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