View Single Post
Old 10-04-2008, 10:26 PM
HiHo HiHo is offline
Junior Member
 
Join Date: Jul 2008
Posts: 14
15 yr Member
HiHo HiHo is offline
Junior Member
 
Join Date: Jul 2008
Posts: 14
15 yr Member
Talking

Hey there! I know I haven't replied at ya yet, but wanted to get my 2 cents in! My son, who is 8, takes high doses of Mestinon and takes Timespan at nite. When he initially started this Mestinon, they also put him on Robinul to help reduce the side effects of the Mestinon. My son, fortunately, never had the "big D' very bad and only drooled a bit, so he never had to take it. You might want to check into it. Hate to see anyone suffer needlessly! Here's to better days for you, my son, and the rest of the MG population.
Heidi
Quote:
Originally Posted by erinhermes View Post
You know, I never had double vison until right before I became really sick! Again, EVERYONE has different problems - min started with a nasal sounding voice and extreme fatigue, then after I became really sick with some sort of "bug", the double vision started - I had no idea my eyes were actually rolling around in my head @ the time - people thought I was on something, when in reality my eyes were just too weak to stay focused for more than a few seconds....not fun! Again, some people just have the eye, swallowing problems, and others (like me) get the full on disease, so hopefully you will only have eye problems, not fun, but definitely better than breathing, swallowing problems, etc........

MG patients usually have problems with the anasthesia - that's why it's so important to make sure that your docs know you have it - that way they can keep you intubated until you can fully breathe on your own. I awoke from my surgery to have that horrible tub e down my throat and fought tooth and nail to breathe on my own - they kept telling me not to fight it, but it's just so darn scary having that thing stuck down your throat. MY brilliant neuro also made sure I had 5 days of IV IG to insure I would be strong enough to handle the surgery (my thymctomy), and it went off without a hitch - painful, but (hopefully) successful......... I do know that my anitbodies were down before I left the hospital, so that's a step in the right direction..........

I've read that a serius illness can make make MG worse, or even cause a crisis - so maybe that's what caused your problems to come to a head - but unfortunately, since there is no known "cause" or "cure", we may never know........What options has your doc discussed with you? Are they talking surgery? Cellcept?

Let me know how you are doing when you get some time

Take care!
Erin
HiHo is offline   Reply With QuoteReply With Quote