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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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03-11-2015, 08:23 PM | #1 | ||
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Junior Member
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Hi all,
I'm new here, don't have official MG diagnosis yet but doctor said she is 99% sure that I have MG because of my SFEMG test results and because I feel better when I take Mestinon. She put me on Mestinon to try it and see if I respond to it. I tested negative for ACH but going to get MUSK test done next week. My question to all of you is did anybody's MG started with crazy strong muscle spasms? That's what I experienced first and that's when I started going from doctor to doctor trying to find out what's going on. Dont know if I can link muscle spasms with MG or it was completely separate issue I had. I will write more later, need to put my little one to sleep now. Geeee it's not easy to deal with MG and take care of the baby. Thanks for reading! Monika |
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03-11-2015, 09:21 PM | #2 | ||
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Member
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Welcome Monika!
I have never had muscle spasms with my MG. Some people say they get twitches with (too much) Mestinon. My symptoms were (and are) muscles that get fatigued with use - especially repetitive tasks. Then generalized weakness if I keep pushing it! Lots of folks here with much experience. Glad you found the site. Does Mestinon help you? |
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"Thanks for this!" says: | AnnieB3 (03-13-2015) |
03-12-2015, 08:47 AM | #3 | ||
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Junior Member
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Quote:
Thank you for responding. I was just wondering if I can link those two together. Muscle spasms went away almost completely when I started having new symptoms like fatigue, muscles weakness. I take Mestinon 3 x a day 90mg. I don't always feel the same after taking it so I don't know if that's normal or not but I think it works. I sometimes feel like a "super woman" who can do all my daily tasks after Mestinon which of course wears of in few hours and sometimes I can hardly tell the difference in how I feel before and after taking Mestinon. This condition is so tricky and confusing. Doctor said my SFEMG was not perfect but not bad enough to make MG diagnosis just based on that one test that's why I'm hoping my bloodwork for MUSK will confirm MG or my Thymus CT will show something. In the meantime I started having problem with my left eye, sometimes usually in the evening my left eye is half closed and it looks much smaller and higher on my face comparing to the right eye. That's not just how I see myself in the mirror but also my family members ask me "what's wrong with your eye, are you tired?". I'm so happy I found this forum as I don't have anybody here to vent to. My husband listens to my complains and concerns but I don't think he takes this as seriously as I do. |
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"Thanks for this!" says: | AnnieB3 (03-13-2015) |
03-12-2015, 10:34 AM | #4 | |||
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Member
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Your husband needs to understand your disease as well as you. He needs to study and read all he can. My wife goes into all my doctor appointments. She now helps me with this disease. She can tell when I need rest and helps me stay in control of this crazy disease. Remember first blood work usually comes back negative. Get your husband on your team.
Mike |
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"Thanks for this!" says: | AnnieB3 (03-13-2015) |
03-12-2015, 11:31 AM | #5 | ||
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Quote:
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03-12-2015, 12:59 PM | #6 | |||
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Member
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Yes only 20% are positive for musk. My first were negative my next test about 6 months later I was positive for 1 antibody. I am now positive for 4. You will take some time to adjust your life style. The worst for me are hot sunshine and stress.
Mike |
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"Thanks for this!" says: | AnnieB3 (03-13-2015) |
09-29-2015, 11:36 AM | #7 | ||
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New Member
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I have stumbled on a treatment for the night leg cramps & fasciculation, low-fat yogurt and a banana with a splash of 2% milk. I've had no night cramps for going on 3 weeks now with the exception of the night I tried no-fat yogurt. So, fat is good!
The dose for my 230 lb. frame is 3 tablespoon-sized dollops of yogurt, a whole banana, and 3-4 oz. of 2% half an hour before bed. I'm good for about 9 hours! I got the idea from a posting here. A couple of folks mentioned a Calcium-Magnesium-Potassium supplement as helping. Those supplements only have something like 30-20-1 mg, respectively, so I went with real food that had tons more. Works wonders for me. For the comparison, I take 10x60mg daily, 2 every 4 hours starting at 9am. So, last does is at midnight-ish with the yogurt (sometimes I add rice crispies & raisins!). I can sleep without a single cramp or twitch/fasciculation for almost 9 hours. However, the twitching starts almost immediately 9 hours after the "dose", but I don't get cramps. Without the "treatment" I would be awakened each night with severe calf, arch, or thigh cramps around 3 or 4am, about 4 hours after the last dose of pyridostigmine/Mestinon., which is about how long it takes for a dose to wear off, right? With the treatment, I get enough twitches to awaken me 9 hours after the "treatment." I've tried taking mestinon at the 7am "pee call" to see if that changes the timing of the twitches. It does not. I'd be interested in hearing if this concoction works for anyone else. Thanks, Clarke |
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