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
![EEK!](images/smilies/eek.gif)
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