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
Quote:
Originally Posted by KTunes
Talked to the doc today. He says I can switch to the lower dose four times a day(rather than the timespan) if I want to, but thinks I should stick with the one I'm taking and deal with the drooling. Tonight has been really great! I haven't had a single problem, with the exception of the ever present double vision (but even that wasn't even bad enough to use the patch).
I read somewhere that surgery can be a problem for MG patients. I wonder if my surgery in July was what made me start to have symptoms? Interesting. I thought at that time that the double vision was being caused by the pain meds I was on for a few weeks post surgery, which is why I waited so long so see a doctor.
Redtail - I see you're from Australia. I was supposed to tour there this summer but I had to have back surgery in July so I couldn't do it. I LOVE Australia - the wildlife is so wonderful. I can't wait to get back there next year.
Erin - your karaoke comment make me giggle, thanks for that! Yeah, steroids are brutal. I can't believe anyone would comment on weight gain. How very rude. I gained a few pounds from steroids last April and was a raging nightmare to be around. I too ate everything in sight!
Neutro- thanks so much for your sound advice. I did tell the doc everything and it was very reassuring to hear that I wasn't overdosing or anything scary.
GaBelle - nice to meet you and thank you so much for taking the time to write. I hope the mestinon ends up working out for me.
Goodnight all. I'm in the studio tomorrow so let's hope I have a symptom free day!
K |