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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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11-12-2022, 12:58 PM
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Biggest Roadblock for a more Solid Diagnosis of Myasthenia is the darn EMG. Closest piece of relevant info I saw is data saying some MG folks must be off Mestinon for more than 24 hours before EMG for good results. Even as much as a week. Given my experience I would need at least 3 or 4 days off it. My old internist was only one that would consider that. If anyone can point me to other factors I would be grateful. I suspect other diseases could be a factor. I also have Sjogrens. I know the quality of who does the test matters as Mayo Clinic won’t accept results from University of Iowa or places in City I live in. I know there is likely info on this site. Me and my eyes appreciate pointing me to it. Thank you. Sculptor 44
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| "Thanks for this!" says: | Lara (11-16-2022) |
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11-15-2022, 08:11 PM
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I am frustrated that history and a good doc reading your body for symptoms seems lost as tools at this point in medicine. I was having a classic Myasthenic Crisis which the wonderful neuro I had then called out when I barely made it to her appointment after a very hot shower that permanently changed me.. she admitted me to hospital. They tried me on Mestinon and it helped per breathing tests AND Me! I have been prescribed it ever since. I asked to go back to that Neuro but Dept of neurology at Iowa City would not Allow it. I just did an Overnight Oxygen test for my old pulmonologist.. when I saw Roberta Flack was diagnosed with ALS and can no longer sing it brought back when my ability to Sing started to Go in 2005. It was the reason I saw my first pulmonologist. I SO loved to sing!! Sculptor 44
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| "Thanks for this!" says: | Lara (11-16-2022) |
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11-16-2022, 03:57 PM
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Legendary
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Hi.
As you know, I don't have MG but read your messages and started having a look in the old threads for you. I'm not 100% sure I am looking for the correct information that you need but I did find dozens of old threads and posts about EMG failing. This one below is about the closest I found regarding time off the Mestinon before an SFEMG. Underneath, I'll highlight the parts in her post that are related to "time off medications". Note: Tests were for SFEMG, not EMG. I can look for more specific info. for you if you need. snipped message below https://www.neurotalk.org/31498-post12.html Quote:
Last edited by Lara; 11-16-2022 at 04:45 PM. |
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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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Information needed on EMG failing
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