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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | ||
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Senior Member
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I'm having a good spell, just in time for my out-of-state referral this Friday. I've had these spells before. In the past, they've lasted two or three weeks. But I probably will not present with any noticeable weakness (since they never test my side muscles anyway, which are by far the most affected).
I'm going to have another SFEMG. My first was "borderline" and my second was mildly abnormal (but not enough to get an MG diagnosis, since I'm seronegative). This is a different doctor. I don't know how my muscles will test during this good spell...I do have the impression that the interpretation of the SFEMG might differ from doctor to doctor, since the doctor who did my first two was discussing the interpretation with another doctor the whole time. He kept saying things like, "No, I don't think that's the same pair...or is it? Actually, maybe it is! And this--is this bona fide jitter? Yes, I think this one qualifies...but we'd better rule this one out..." It sounded like there's a lot of "nose" to it. Anyway, I don't have really high hopes for this appointment, unless, as has happened many times before, I wake up one day before Friday in a state of complete relapse. One never knows...Meanwhile, I walked to church (two blocks) on Sunday, and back again, and I baked cookies today. I need to concentrate on appreciating this "up" time without thinking too far ahead! Abby |
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#2 | ||
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Member
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Abby, So glad to hear of your boost. But the timing sounds bad. I had the same thing happen when I went to Mayo Clinic. I was new to the symptoms of MG then and didnt realize how good I can get with cold weather and for sure the added sleeping in very cold room in winter too. That was in November of 08. I got up to go to the clinic for my emg day and was walking with an ease, a liteness I had not had for well over a year if not years.
The young neuro I have currently did that same 'chatter' back and forth with a very senior doc who entered after a couple minutes. He was the head of the dept I think. Also my Sfemg was being seen by students in another room. That felt odd. It was a small room. I was laying on this table with my right arm closer. She was gonna start and I said my left is the weakest side. She paused and then said no it wouldnt make any difference. I think she was more sure it would be less convenient to get me moved to do the left arm. Annie59 |
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#3 | ||
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Grand Magnate
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Well, that's a mixed bag, isn't it?
![]() Abby, That's good you like to bake. Spend an entire day in the kitchen making a bunch of stuff. Or exercise for a couple hours. Both will wear out your muscles and heat you up. The baking, etc. from T-Day tanked my MG two days later to the point where I thought I might be forced to see my neuro. Standing in a hot kitchen was too much for me. I hope it goes well, whatever that means, and that you have an outright positive result. Do make sure that you are warm for the test, and well hydrated. If one side feels weaker, make sure they do that side. Doctors often have this particular way they like to do the test, all set up in a room to do the left or right side. It's as if they couldn't possibly do things differently, even if it means doing the testing accurately. I wouldn't recommend this but I've always wondered what the effect of drinking alcohol would have on a SFEMG, since it always makes me almost instantly weak! ![]() Good luck! Annie Last edited by AnnieB3; 11-30-2010 at 09:22 PM. |
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#4 | ||
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Senior Member
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Thanks, Annie, that's a good idea. I'll wear myself out a bit! I'll take the kids to the library. That's always does it, for some reason. I'll also get started on my Christmas cookies. If it doesn't help with the appointment, at lesat I'll get something done!
Take it easy and get yourself back on track... Abby |
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#5 | ||
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Senior Member
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Quote:
I have had similar experiences with alcohol. If I'm in a bad spell, one sip makes me almostly instantly alarmingly weak. But I had a glass of wine on Thanksgiving, and did fine. This is really weird. I just got back from the most exhausting thing I could think of, which is shopping for clothes. And I'm still vertical. I was determined to overdo it, but I'm in all these habits--park close to the door, don't try to look for things on the other side of the store, do only one errand per trip--so I had to make myself break every rule I could think of. I had fun! I bought a new outfit, and stopped at the grocery store for Christmas cookie ingredients. Now I'm going to bake. And if that doesn't do it, I may just consider myself Cured! Abby |
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#6 | ||
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Member
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Nan, Isn't that the way it always seems to happen. When we need to go for a test and need to be at our worst, for some strange reason we manage to be at our best. Go figure, it must be some kind of "goverment conspiracy" or something.
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You never know how STRONG you are, until being STRONG is the only choice you have!
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