Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 06-27-2007, 09:40 AM #1
Mommyof2 Mommyof2 is offline
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Mommyof2 Mommyof2 is offline
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Smile It came back!

Hello,

I'm so happy that I found some people that I can talk to about Myasthenia, besides my doctors. No one in my family ever heard of Myasthenia Gravis. I first had it in 1994. Summer of that year, the symptoms started showing, I was able to go for Thymectomy within 2 months of my diagnosis and 6 months after, it was gone again. No Mestinon, no anything. Thinking about it now, it was really fast, the way it came and then gone. I was really counting myself very lucky. Then December of 2006, the symptoms started showing again. Now, I'm back up to 2 tablets of Mestinon every 4 hours and I don't think it is working that well. My strenght and eye sight are fine, it's more my speech that is being affected. Even after taking 2 tablets I have trouble with my speech; however, at times my speech goes back to normal when I rest for few seconds. I feel a rush of energy an hour after taking it, but my speech improvement is very minor.
My Neurologist advised me to decide on my daily dosage, but to be careful of overdose. How much Mestinon can I take without overdosing? Is there anybody that might have done something, on top of taking the Mestinon, that help them significantly? I am getting really scared as I have 2 small kids and I sometimes see confusion/fear in their eyes when I talk to them and I slurr.

Thanks for listening.
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Old 06-27-2007, 10:17 PM #2
The Canadian The Canadian is offline
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oh, you'll get to know the right amount of mestinon to take. when you feel weak, you'll know you need a pill. Kinda like a headache.. if you wait too long, the headache will get worse, right?

Don't let anyone fear you into thinking that you won't know when to take your pills. Listen to your body. you are the best person to know. I may sound like sort of a yoga meditation guru type (and although I do yoga stretches, I'm not a new-age being of sorts). But if you sit quietly and really listen to your body, it will tell you what you need.

Namaste. ha.

I've been on various dosage schedules of mestinon since 1986. The only time I really overdose is if I get distracted and forget if if I've already taken my pill. That's when the muscle twitching and slurring start for me.

Jennifer in Ontario
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Old 06-27-2007, 11:49 PM #3
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Mommyof2, the amount of medicine you can take without overdosing is going to depend upon your own particular case of MG, and may actually vary depending on whether you are having a very bad, or very good day.
The advice I was given by my neuro, when i first started on Mestinon, was to increase my dosage by 1/4 of a tablet at a time. That is, the first day I took 1/4 pill every 4 hours. The second day, 1/2 pill. The third day, 3/4 pill. He said that when I noticed signs of overdose, to stop increasing and drop back down 1/4 pill, and that would be my optimum dose. You may be able to try a similar process. Add 1/4 tablet to the 2 pills you are taking, and see if you get symptoms of overdose.
With me, overdose almost always starts with muscle twitches, especially around the eyes. I may get stomach cramps, diarrhea, excess saliva. If you are worried about overdose symptoms, you might ask your doctor to prescribe the antidote to keep on hand just in case. What I used to be given was Atropine, as I remember, but now it is Donnatal, which is Atropine combined with some other meds. I may only take it once a year, but it is nice to have on hand if you ever do overdose.
If you get overdose symptoms with what you feel is your optimum dose, try taking the Mestinon with food.
Hugs,
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