Originally Posted by cait24

I had symptoms of MG for several year before diagnosis. When I started falling, my appointments and test got bumped up in priority. I was also started on mestinon, even though I did not have a definitive diagnosis. I am antibody negative and diagnosed by a single fiber EMG. MG is rare, few neuro have ever seen it. You need to get to see a neuromuscular specialist at a large teaching hospital so you can get a proper diagnosis and treatment. Are you close to Mayo clinic, john hopkins or cleveland clinic? If not try the MDA site, they have clinic in many states.

Life does get more manageable as we accommodate our life style. I have had many falls both up and down the steps. I only use the steps once a day and take my mestinon before hand, go very slow, one step at a time and use both hands to support me. I cannot even carry anything on the stairs,

The need to ultra-plan your life is very true for most MGers. In time, it becomes second nature, unfortunately. At first, if I had a good day, I would try to do more. I learned the hard way, by falling, that I cannot do that. You will pay for it later in weakness, sometimes for days. You need to slow down until you get a proper diagnosis and treatment, and most probably even after that.

GOOD LUCK
kathie