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Old 04-13-2010, 11:33 PM
suev suev is offline
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Join Date: Jun 2009
Location: Texas
Posts: 748
10 yr Member
suev suev is offline
Member
 
Join Date: Jun 2009
Location: Texas
Posts: 748
10 yr Member
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Susan,

My neuro says for me Mestinon dosages are 'subjective within boundaries'. I'm not supposed to exceed 120 mg per day (or 60 mg in any single dose) - - but I don't have to take any if I don't feel like I need it (which has not happened yet and probably never will!!)

To give you an idea:

Sunday, I hung around the house and didn't do much of anything until mid - afternoon when I figured I'd better prep some flower beds. I had not taken any Mestinon at all until I decided to work outside. Then I popped 30 mg. 4 hours later, I was finished with the garden, cooking and eating dinner and I took another 30 mg. (the plates feel heavy when loading the dishwasher was my clue!)

Now today, I took 30 mg at 8:30 before going grocery shopping. Took 60 mg at 11:00 before heading off for a round of golf. Took 30 mg at 1:15 cause I was still on the golf course and felt good enough to keep playing...but needed a bit of a boost. And then around 6 pm, I took another 30 mg. cause I was droopy, but still wanted to function.

So, Sunday was a 60 mg total day with not much activity....and

today was a 150 mg day (which technically exceeded my daily limit).

For me, the more active I am - the more I need ... but I know the difference between 'I'm tired and I need to rest' versus 'I'm flagging a bit and need a pill' versus 'this is a really bad day and I need to take it easy AND pop 30 mg every four hours or so'.

I'm still working closely with my neuro on all this and I'm sure things will change again as we get into the warmer weather. The one thing I am supposed to look out for is muscle twitching. If that starts to happen - there's a good chance I have reached my upper tolerance limit on the Mestinon. (I have only experienced minor eye twitching - which they don't pay much attention to. It's when a big muscle twitches repeatedly that I'm supposed to be alert for.)

I am grateful my doc is giving me such leeway to try and stay active. And, I can say my shortness of breath has disappeared with the extra Mestinon for golf. But we know each of us is effected so differently...by the MG, by the meds, and by any and every- thing else!

Still I hope this info helps you....Sue
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DesertFlower (04-14-2010)