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Old 01-11-2017, 07:51 PM
Snoel Snoel is offline
Junior Member
 
Join Date: Oct 2015
Posts: 78
8 yr Member
Snoel Snoel is offline
Junior Member
 
Join Date: Oct 2015
Posts: 78
8 yr Member
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Welcome a board, you will have a lot of good info and input, hopefully it will help you get and feel better...

I'm no Doctor but me having Mayasthnia now for 9 yrs now and been through some tough times I can recommend you on a few things like your Mestinon I would try taking it more frequent during daytime, try 30mg or half a 60mg pill every 4 hrs starting from time you get out of bed and see how you feel...Up as you get more active and your worse enemy is HEAT and humid heavy weather, don't take HOT bath or shower and STAY OUT of Hot Tubs. At bedtime I take Mestinon SR 180mg to get me through till morning, I try to get between 7 to 8hrs sleep.

I don't know were you live but myself being a Canuck I much prefer Winters cool/cold than our stupid HOT and humid mugy summer weather...I have to up my Mestinon by a lot when the going gets too HOT, even STRESS, emotion, lack of sleep will have a big affect on your symptoms, also do not overdue things learn to get help to get chores done... Please listen to your BODY!

You will get to know what affects you and you'll have to make lifestyle changes and adjustments.

One last thing please try to stay away from PREDISONE... Sometimes we have no choice, I've been off since June 2016 and now having major problems with withdrawal effects like severe muscle and joint pain symptoms...I'm now on Imuran as a immune surpressent which I've had good success and with very little side effects...so far and I also do IVIg and PlasmaPheresies.

But before you go ahead with any changes please speak to your Nuro/Specialist what works for one doesn't always work for other's...Everyone is different.

Good luck and keep us posted on your progress.
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"Thanks for this!" says:
FREDH (01-11-2017)