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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#11 | ||
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Grand Magnate
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Sue, Eat whatever you want! The body is usually very good at adjusting our electrolytes. If you have a hard time drinking water, have you tried flavored water like LaCroix? I like the bubbles.
![]() Abby, that explanation was cute and simple (for your kids). They can handle that. |
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#12 | ||
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Senior Member
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Well, I was trying the Mestinon every two and a half hours, but I haven't felt better, and it makes me really twitchy. On my every-three-hours dose, I would get an occasional twitch--but nothing like this.
I only tried it for a few days. It's so hard to tell whether you're experiencing a fluke, or a real response to what you've changed. But I know that too much Mestinon causes muscle twitches, which makes sense to me: too much acetylcholine, over-stimulating the muscles=twitches. So I really think I'd better back off. Thanks again, Annie, for your warnings, which I have taken seriously. Abby |
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#13 | |||
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Member
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Abby,
I found that through experimentation, similar to what you are going through with limits discussed with my doctor, I was able to find the dosage of Mestinon that helps me the most. It makes a huge difference to find that dosage that works best. I found that any changes to that schedule make my symptoms worse. Mestinon doesn't make my MG go away completely but it does reduce them to levels I can find a way to live with. ![]()
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#14 | |||
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Member
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Abby,
I wanted to add to my previous entry. I am still learning about MG and Mestinon, and I am glad you have joined this group. Please continue to share your experiences since we all learn from each other. I have learned what Mestinon dose helps me for a regular day, but I have not figured out how to deal with these days that are different, days when I am tired, days when I work extra, or days when I feel sick. I think that I may need occasional changes to my Mestinon but I haven't figured out what works yet. Sometimes when I relax all day I feel like I am taking too much Mestinon, yet I still take it regularly. Maybe on these slow days I should take less? Also, I have noticed the monthly hormone cycle has a big effect on how I feel and I wonder if I should be adjusting the Mestinon for that since there is about 1 week in every month where I am finding that I feel pretty good and that is the time when I get Mestinon overdose feelings. Also there is another week every month that I feel bad and probably need extra Mestinon. My doctor insists that I take Mestinon regularly and only change the dosage rarely and if I am absolutely needing more or less. He wants me to stick to a schedule no matter how I feel, unless of course I am getting overdose symptoms or getting so bad that I have to stay in bed. I am following his orders for now, but realizing that he might be wrong. He has given me an okay to adjust my dose when needed, so I am considering taking a little extra when I feel bad and possibly a little less when I feel good even though this isn't what he intended. I am still learning.
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