You sound like you are very sick and in need of medical attention NOW - TODAY! When I had a crisis, my doctor had me admitted to the ICU (couldn't breathe) and I was there for 9 days! While in the hospital I was given IV IG, blood and steroids - the difference was AMAZING! You really need to find a doctor who knows (and cares) about what's going on so you don't have to continue to suffer like this. I had surgery on April 22 to remove my thymus ans hope to be in remission soon, but am still on steroids and have been told that I probably will be for at least 1 year. Please,please take care of yourself and get treatment! Are you on Mestinon as well?
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Originally Posted by eeyore2
What treatments do your docs recommend for "flare up's" that interfere with everyday life?
I now get short of breath walking very short distances and talking and my swallowing has gotten to the point where I had a feeding tube put in 3 wks ago and theoretically shouldn't taking anything by mouth.
I have been told to rest and take it easy, and after 1-2 weeks of that, am not much improved (although I can breath OK if I'm sitting propped up against something and not talking)
I have an appoint with a doc at Hopkins the end of July, but i really think that something should be done now. I called my neurologist office yesterday and told them the SFEMG at Hopkins was positive, but I've not heard back yet.
I'm getting tempted to do a trial of prednisone myself as I have a bunch around from various asthma issues.  Even if I screw up, at least I'm trying something |