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Old 11-10-2011, 11:22 PM
Ravenred Ravenred is offline
Junior Member
 
Join Date: Nov 2011
Location: Northern IL
Posts: 31
10 yr Member
Ravenred Ravenred is offline
Junior Member
 
Join Date: Nov 2011
Location: Northern IL
Posts: 31
10 yr Member
Grin

Quote:
Originally Posted by Stellatum View Post
Great! The fact that you're his first MGer also explains his excitement when you responded to the Tensilon test just like the textbook says you're supposed to do.

I'm glad you got the Mestinon prescription. Here's some things to know. First of all, if it bothers your stomach, take with food. It bothers some people's stomachs, but not others'.

Mestinon has a really short half-life. After about four hours, about half of it has already left your body. So if you find that it works, but only for a few hours, typically the neuro will tell you to take it more often instead of taking higher doses. That makes a lot of sense.

Understand that too much Mestinon can make you weaker. So pay very careful attention to how it affects you. If you keep a journal, you will be surprised at the patterns that show up that you hadn't noticed. Write down when you took the meds, what symptoms you have when, and anything else that seems relevant: how much sleep you got, what activities you did, any emotional upsets, heat or cold. A lot of MGers do better in the cold.

Some people find they need Mestinon at night, if they wake up choking or wake up with double vision (your eyes move in your sleep). If you do, ask for Time-span, a time-release version of Mestinon that saves you from having to get up in the middle of the night to take a pill.

Again, take new symptoms seriously! Any trouble breathing, choking, or sudden or extreme weakness can be a sign that you're headed for a crisis, which is a medical emergency. There are emergency treatments for MG.

Abby
Thanks for the advice - neuro warned me about the trots side effect but I've actually been experiencing something more embarrassing (although it does have a hilarious side to it) over the last 12 hours - instead of the trots, grammy here has the toots which happens to have my 5 year old grandson (who lives with me) in hysterical fits of laughter and trying to compete to see who can make the loudest sound! Ah well, I'd rather be giggling, laughing, tickling, and tooting away with him then sitting and wondering why I can move to play with my little guy.... Air freshener is a cheap price to pay to be able to play with him again.....
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