Joanmarie - I'm so glad you clarified this! LOL
Quote:
Originally Posted by Joanmarie63
I actually spent Tuesday in bed all day, only getting up to potty and I haven't done that in over 17 years {the staying in bed part..LOL}
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Marcia and any other new members - WELCOME
Because MG can fluctuate day to day, even hour to hour, once you get going you may find you need it more or less than your Rx says. Try to keep track (preferrably in writing) of how you feel before taking the Mestinon, when you start feeling relief, how long that lasts, what you were doing during that time frame, etc.
This will help your doc to determine the best dosages for you. If you notice any shortness of breath or extreme increase in weakness call your doc or go to the ER as this could signal a crisis. I mention this because on my first real serious bout with MG, 60 mg 2x/day didn't even come close to keeping me safe.
I had several episodes on the couch barely breathing, unable to move or even respond. I only had a prelim dx at that time, and didn't know anything about MG - hadn't been warned about the symptoms of crisis - and am just really lucky to have survived it!
Mestinon can take effect within minutes - for me it takes about 20 minutes when I'm really bad. It's not one of the drugs that has to build up in your system before working, and doesn't stay in the system for a real long time - 24 hrs is generally more than enough to clear it.
If you aren't noticing a dramatic improvement after keeping your log, you may want to call your neuro and see if you can try increasing the dose - don't do this without checking with them though! I am at a point (14 years with this disease) where I'm allowed to dose myself as I need to - sometimes 60mg every 2 1/2 hrs, sometimes 30 mgs for 6 hrs - but that's because I have so much experience with recognizing my bodies signals and know what can happen with an overdose.
Glad you've joined us - I look forward to sharing experiences with you!
It's a very scary time, just after a diagnosis, with millions of questions and emotions. It's difficult having a disease that is rare - you have to learn so much on your own. I wish I would have had a forum like this when I first discovered mine. It could have saved myself and my family a lot of stress and uneasiness.
Hugs to you
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Becky