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Glad To Find You Guys
:hug::hug:Hi All,
Found this sight by googling Myasthenia alerts for weeks---it sounds so promising!I just wanted to say hello and introduce myself.I'm a myasthenic and have been for 39 years(since I'm 12yrs old).Treatments have varied over the years but I'm very lucky now to be off all mestinon. Like many of you,and listening to what you posted the problems seem to be other problems that myasthenics have to deal with such as Migraine,Diabetes and othe inflammatory conditions. I hope to glean some information from some of you and would be so happy to pass on anything I could to anyone from my experiences as a mother raising 4 children.Thanks for listening! |
Hi, and glad you found us. I haven't been posting real regular, but wanted to welcome you. People are very friendly here, and care deeply.
You've had MG since you were 12?? Wow, yes, you can definitely say we could learn a few things from you...definitely more than a few things..:)I was diagnosed in 2004, and it's been a bit of a bumpy time of it, but not as bad as I've seen some go through. It can be so frustrating waiting for the right med combo to kick in. Okay Okay, it can be down right annoying:D, but what's a person to do. It is amazing how everything seems to affect MG, and it acting up. Sometimes I do feel like I'm walking on egg shells with it, a very delicate balance to say the least. Anyways..wanted to welcome you..."welcome" Love Lizzie |
Thanks so much--yes it's very fuzzy feeling here.Being that it's New
Years Eve ,no time for more than a quick hello--not that I'm partying,but I am babysitting 2 grandchildren.So I'll be talking again soon.By the way what meds are you on? |
Hi, some of the meds I've been on have been Imuran, Cellcept, and I believe one other, but can't remember what it was.
I'm currently on Cyclosporine 300 mg daily. Prednisone, I'm down to 15mg daily mestinon 60mg , 2 daily Effexor xl to help with fatique, and it's also used to treat my dysautonomia Provigil was first given to me to help treat the fatique one gets with MG, and then I was diagnosed with Narcolepsy, so it's kind of killing two birds with one stone. Those are the ones I'm on for MG In total I'm on like17 different scripts per day, and that doesn't count the multiple dosage ones. I never in a million years would have thought, or even known that people take this much medication to live. it's pretty awful, but I'm thankful at the same time that we have these meds. Best of Wishes, and Happy New Year Love Lizzie |
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