Thanks, Annie for the good advice.
No, I am afraid my Superwoman days are in the past. My weakness is way too scary to want to do that again. Just between doses today was a bit unnerving. Hopefully, I will be able to get a steady level worked out before too long.
Quote:
Originally Posted by AnnieB3
Linda, I'm glad you have a doctor who realizes that MG is a clinical diagnosis backed up with testing. But, he's right, you do need some evidence from a SFEMG or a Tensilon test.
There was a study done by Dr. Howard of UNC that said the effects of Mestinon can last up to 2 weeks. Just saying. No, you don't want to go into a crisis but you do want to optimize the test results. Hopefully, the person doing the test will be very good at it.
That's all I had when I started Mestinon. I had a little increased salivation for the first dose and that was it! No more side effects other than it made me feel stronger.
You need to take it easy. The way you describe your weakness is concerning. Please don't do that thing where you think Mestinon makes you super woman!  It is counteracting the level of weakness you already have. If you do too much, you'll get weaker still. Remember that more (higher dose) isn't necessarily better with Mestinon.
I hope you get answers soon. Waiting is really hard.
Annie |