Quote:
Originally Posted by limpy
I have Lems and possibly seronegative mg, but have never been denied mestinon, even when I didn't have a confirmed diagnosis. I would advise you to get an unbiased second opinion. Many of us have had to get more than one doctor before getting diagnosed and properly treated. Some, unfirtunately, are still searching.
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Thank you for your response!
I questioned my neuro last year about LEMS because I am able to lift weights still and have good strength in the gym. With MG people have progressive weakness upon exertion. She said no, it's not LEMS, that I have the strength from being on mestinon.
She is not denying mestinon, she is having me stop it for 4 weeks to see if the cramping subsides. I did 2 weeks at 60 mg day, 1 week at 30 mg day and yesterday was my first day off it completely. It's very difficult cutting back and now that I don't have any in my system I feel pretty weak. I will stay off until April 4th. If I have a breathing episode I will take it before then.
Even if she told me to stop the mestinon, I have 5 or 6 100 count bottles that do not expire for a couple years. I will continue to take it either way because it helps my weakness (vision, quads and upper arms and my breathing).