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Old 01-13-2019, 03:16 PM #1
cosmoe cosmoe is offline
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cosmoe cosmoe is offline
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Default medication timing

Hi again guys,

So i have an rx for 30mg of mestinon (half of a 60mg pill 3x day) and it does seem to work pretty well, but obviously the effects dont last for super long... so is it better to take it once the symptoms start getting annoying or before i start doing something that will wear out my muscles? Right now whats bothering me most is that my neck/throat get tired from pretty normal stuff (looking down at a phone/book/whatever or just....... keeping it upright in general lol).

It's never bad enough that i feel like i can't breathe or might be in danger of choking or anything but it Is annoying and I'm just not sure how to space the mestinon to alleviate it.

thanks!
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Old 01-13-2019, 11:42 PM #2
AnnieB3 AnnieB3 is offline
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AnnieB3 AnnieB3 is offline
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cosmoe, Are you only on Mestinon?

With MG, it's always best to stay ahead of any weakness. If you are going to be out doing something, then take Mestinon before you go out. The weaker someone with MG becomes, the longer it can take to recover. So you want to keep MG on an even plane, not a roller coaster ride!

You might need to talk to your neuro about increasing how many times a day you can have that little dose! Since Mestinon kicks in after about 20 - 30 minutes of taking it, and then wears off about 2 hours after that, you probably need more during the day.

Please talk to your neuro about all of this, okay? To me, it sounds as though your MG is not sufficiently treated.


Annie
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cosmoe (01-15-2019)
Old 01-15-2019, 05:12 PM #3
cosmoe cosmoe is offline
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It's a little complicated because it's still not technically an official diagnosis– i had an sf-emg in mid-december and am still waiting on the results, but I'm following up with the neuro in a couple weeks so if pestering the lab about it doesn't work I guess I'll find out soon? Lol.

Thanks for the advice though! You're a great help & I'll definitely try to talk to the neuro before then.
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