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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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Grand Magnate
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Just don't keep wearing the same socks MG game after MG game, like some baseball players do. Good one, Celeste.
Abby, Change can be hard to ascertain when it comes on slowly. Maybe you've been gradually getting better but didn't notice it right away. I have no idea why you're better but I'm glad you are. Annie Last edited by AnnieB3; 03-08-2013 at 02:56 AM. Reason: Off planet |
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#2 | ||
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Member
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Abby, if we could solve this mystery, it would make my life a heck of a lot easier.
After my last crisis two months ago, I wrote down every single warning sign I had been having to be aware. I somehow thought I was giving myself "THE KEY" to unlock the mystery of how to head off a crisis or something. Since then, when I've had a few warning signs, I have realized that they don't mean I'm going into crisis. I have this list and really, it's kind of useless, because they come and go, and it really all comes down to whether I can breathe or not. I spent every one of my 9 days in the hospital trying to figure out what I did wrong. The day before, I'd felt unusually great after being down for the count for the two weeks after Christmas. Then, BAM. The doctors kept reassuring me there wasn't any clear reason; I'd missed a week of IVIG before; I'd had a ton of stress before, and I'd sure as heck overdone before and NOT gone into crisis. I can be horrible one day and suddenly wake up great the next. I've started to feel like MG is just one big ugly surprise party. I really hope it's the Immuran doing this! I feel as if there is often no visible rhyme or reason to any of this. I WISH THERE WERE! I have pushed myself to the point recently where I thought I'd end up in the ER and woken up the next day ready to go again. After Christmas, I stayed in bed resting for two straight weeks and still went into crisis. I hate the unpredictability. When I have good days, I never know how long the tease is going to last. But there are factors we can sometimes pinpoint, and right now I'm saying a prayer that you increased Immuran is kicking in, and it's going to stay fantastic for you!!! ![]() ![]() |
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#3 | ||
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Senior Member
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Thank you, Tracy! I'm still "up." I haven't been down (as in literally lying on the floor!) for about a month now. And I can't figure it out. We have a TON of stress here (I have a boatload of mostly-grown children with big-kid problems). I've been working as hard as usual. I guess the Imuran is the only conjecture that makes any sense. But if that's it, I'm not expecting this to last, because I got an Imuran boost before, upon having the dose raised, and it lasted three months and then I sank back down. But thank you for your reassurance, your prayer, and your good wishes.
Abby Quote:
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#4 | |||
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Junior Member
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I've been having some pretty rough months myself, since Dec 31st to be exact, it started with my back (not exactly MG related but I'm sure the MG didn't help), and I have been having MG and hypoglycemia days often... in between I had to fight a cold, stupid job, and hormones. Plus it's been pretty cold here, and any low pressure system that comes through the area drives me nuts, so I kinda blame it on that as well. I don't know where you are living, but I'm in the North East and we've been having some crazy weather since October! I'm hoping once the warmer weather kicks in, I'll find my happy medium until it becomes wickedly hot again and brings me to the other extreme lol.
I've also had a few days in a row when our house was very cold, we could see our breathe and that did NOT help. ![]() ![]() |
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