I am meeting my Neuro on Monday, and was anxious to have input on some of my questions before having to make decisions about my near future.
I noticed a lot of you thought I may be taking too much Mestinon....I did work up to this amount, I started at 60mg X3 , then 90mg X3 then 120mg X3, now I'm up to 4x. I would love it if I could lower my dose, but I'm lucky some days to make it to four hours before I need my next dose. According to my Neuro, my immune system came rushing back after I gave birth, thus exacerbating my symptoms, and possibly still doing so....Also, pretty much every muscle I can think of is very affected .... throat, mouth, jaw, face, breathing, arms, legs, fingers, back...and when I wake up I can hardly roll myself out of bed to get up and barely swallow my meds...occasionally the water refuses to go down and instead goes up Also, even on my good days, when I actually feel human, I can not go more than a few minutes of anything, before those muscles are totally worn out. I am doing ok with trying to manage, but my biggest question at this point is, How normal can I expect my life to be without Prednisone, and since I had the surgery, is it worth all of the side effects to start taking, when hopefully the surgery will start taking effect soon. I am schedued to start back to work in two weeks, but with everything that has happened (I have only had two months to deal with this disease so far) am I pushing myself too hard?

For example, I felt pretty great following my surgery, less the pain from the surgery itself, and then wham I get a womanly infection from the darn antibiotics, and feel like a total cripple, worried I'm going into crisis...So I guess the question I really need help with is this....

Should I go back to work at any cost, since I love my job and get to work from home (ie: take prednisone if working and taking care of my kids is too hard with the Mestinon alone)
or should I stay out for a few more months and let the surgery work it's magic, and pray they hold my job and don't cancel my ins. (I can get Cobra if they do that...) I should add that I work from home, and also have 2 children in pre-school, and an infant home with me, whether I work or not, I have to take them to school and take care of the baby all day. My hubby is in full time school and has to miss days when I can't manage the children...

What would you do?

Again thank you all for your help, I am unbelievably thankfull I found this site, and can't wait to get to know you.

Jessica