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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Join Date: Jun 2007
Location: Winnipeg, Manitoba
Posts: 3
15 yr Member
Mommyof2 Mommyof2 is offline
New Member
 
Join Date: Jun 2007
Location: Winnipeg, Manitoba
Posts: 3
15 yr Member
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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