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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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07-25-2018, 04:30 AM | #1 | ||
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Wow Annie!
i wasnt expecting that explanation. Thanks My first EMG was done in the right hand in my eye. The one in the hand showed a decrement of like 6 or 7 % which was normal to the doctor who did it. The one in my eye showed a decrement of near 20% so he said it was clearly abnormal. It was much more painfull and longer than the one i was done before. The point is that I havenīt symptoms in my face but the first doctor said that it was not needed and that the face was the place where it was more easy to detect since it is a small muscle. I have got proximal weakness which is better when day starts and worse when finish and they did the test because they found thymic hyperplasia in a tac. Regarding SFEMG, i think doctor tried yesterday to in the frontal muscle of my head, but she didint seem to know much about it, she told me that it was hard to do and that she would need my help and when we finished she told me that she didnt know if she could take much information from there. From my point of view the first one knew much more about it than the second one. I started taking mestinon yesterday and i felt great, but i dont know if it could be placebo or not. Thanks for your help Annie. Navario. |
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"Thanks for this!" says: | AnnieB3 (07-25-2018) |
07-25-2018, 10:34 AM | #2 | ||
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Grand Magnate
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Yes, the muscles of the face tend to be positive early on in MG. You can test yourself for ptosis or double vision, but you could see a neuro-ophthalmologist as well.
Put your pointer finger in front of your eyes about a foot away. Slowly move the finger back and forth in front of your eyes, while your head stays still. Do you see one or two fingers? If you see two fingers and close your eyes, do you then see only one? That is called "binocular double vision," and is typical of those who have MG. The muscles around the eye focus differently, due to weakness. You can also take photos of your face in the morning and then later in the day to see if you have ptosis. Some people don't even notice they have it. Do you become worse in hot weather? That is typical of those with MG. So try to stay cool. If you do become too hot, cool down right away, and even take a nap if you can. The Single Fiber EMG is difficult to do, even for those with experience. The fact that you had 20% decrement is very telling. Mestinon rarely has a placebo effect. Does eating food have a placebo effect? If a person without MG were to take Mestinon (which many Gulf War service members did), they would have symptoms of diarrhea, excessive tearing (eyes watering), increased bronchial secretions, twitching and cramping muscles, etc. from an overdose of acetylcholine. People with MG just become better on Mestinon. I can't say if you have MG. But you seem to have the signs and test results indicating that. You probably need a long conversation with the doctor about doing other antibody tests, what treatments there are if you have MG, and what the next steps might be. You could always consult with Dr. Eymard. Many people do. If you do have MG, there is a lot to learn about it. I don't want to overwhelm you with info until you have a solid diagnosis. If there is anything you need, please ask! Annie |
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07-26-2018, 06:00 PM | #3 | ||
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Quote:
Hi Annie, thanks a lot for your response. As I told you the other doctor seemed to know much more than the one who did it on thursday. The thing is that muscle weakness has improved a lot with mestinon despite of the fact that it hasnt completely gone. After three days taking it I am waking up refreshed, thing that i havent done in years.. I canīt talk with my neurologist until 20 th august, but I think that I certainly can have it. Thanks a lot for your interest. I will tell you all when I know more. Navario. |
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"Thanks for this!" says: | AnnieB3 (08-17-2018) |
08-14-2018, 06:45 PM | #4 | ||
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Junior Member
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One other consideration is to make sure they do the testing with the muscle warm. If you look in the Hot Weather thread I posted a study that showed a 5C change in temperature can have a huge impact on test results.
BTW I was also scheduled for my first EMG test on Aug 20. Last edited by LeeMac; 08-14-2018 at 07:11 PM. Reason: added info |
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"Thanks for this!" says: | AnnieB3 (08-17-2018) |
08-14-2018, 09:25 PM | #5 | ||
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So if the doctors I saw did the EMGs in room so cold I needed a blanket and was still chilly, the results were doomed? Most likely nothing would show?
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"Thanks for this!" says: | AnnieB3 (08-17-2018) |
08-15-2018, 07:59 PM | #6 | ||
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Junior Member
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The article was from 1974 and was a nerve stimulation test vs SFEMG if I understand the difference correctly. As I understand it though I think the results should still apply, at least generally.
At 31C the reduction was 9% which is near the bottom of normal. Warming the muscle 5 degrees to 36C resulted in a 44% reduction which is large. In another test they cooled a muscle from 34.2C to 30C and reduction in response improved from 25% to 4%. From that they conclude that false-negative diagnostic tests can happen due to unduly low temperatures. Here's the full citation S. Borenstein, JohnE. Desmedt, TEMPERATURE AND WEATHER CORRELATES OF MYASTHENIC FATIGUE, The Lancet, Volume 304, Issue 7872, 1974, Pages 63-66, ISSN 0140-6736, |
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"Thanks for this!" says: | AnnieB3 (08-17-2018) |
08-16-2018, 09:58 PM | #7 | ||
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Quote:
Every other EMG I've had, the room was really cold. What the heck??? |
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"Thanks for this!" says: | AnnieB3 (08-17-2018) |
08-22-2018, 05:50 AM | #8 | ||
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New Member
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Thanks guys.
I have realised that coke can act as Mestinon. I had some glasses of coke just before my last emg, the one which was negative Can this have afected the repetitive emg? My neurologist want me to try Prednisone since I have got thymic hyperplasia and one positive emg. I feel much better since mestinon, but it doesnt work every day and sometimes i dont take it and im fine, other days i take it and im not, other days it helps some muscles but not others. Itīs strange. The point is that I am not sure if this is MG or not so I am scared of prednisone. Thank you all for your replies. |
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