Hi Erin,
I never had problems with my limbs, the first symptoms were speaking and swallowing. We were plenty nervous for sure. I'm just out of the hospital on a day-pass here now as I had a minor crisis and they've been keeping me in there while they clear the pneumonia out of my lungs. While in there, my neurologist did come up and see me and got me rolling on plasmaphoresis - 5 days an hour a day and it has made a world of difference in my condition.
I was already on Mesthinon 60 x 3, we've bumped that to 90 x 4 while I'm in. That is helping a lot too. I'm able to eat, although it is going to be a little stretch before I'm back up to a normal eating pattern; this crisis* kicked the *&& out of me. (*note: not a full blown Myastheniac crisis, just a very severe aggravation caused by pneumonia.)
I live in Atlantic Canada.
Brian
Quote:
Originally Posted by erinhermes
Swallowing, eating and breathing were the last things to go for me. I don't know how you do it - I was sooooooo scared @ that point! 
Maybe, maybe, maybe you need to be on meds - steroids or IV IG or plasamaphoresis if you are too weak to eat. I mean, you can't really get stronger unless you have enough nourishment. It sounds like the Mestinon isn't enough for you and you need more meds/anther neuro........
My neuro made me go to the hospital for IV's full of fluids, IV IG and blood b/c I was too weak to swallow (or do anythig else for that matter) and started me on steroids while I there - they have to do that b/c Mestinon and steroids can SOMETIMES cause problems when you first take them together. I did not know that until a friend of mine who owns edrugsearch.com pointed out a boatload of information regarding Mestinon and Prednisone......
Where are you living? I am truly, truly sorry to hear that you are having these problems and will keep you in my thoughts and prayers.... 
Hang in there and get in touch with your neuro quick!
Take care!
Erin  |