Hi Alice MD,
Although I do not have MG I relate to the lack of compassion and misunderstanding of symtoms and their effects that many of us living with various neuromuscular disease are met with. I have been trying to get a solid dx for a number of years and have been met with various levels of contempt, abuse and negligence, if the face of 5 EMG's postive for myotonia and a muscle biopsy that showed moderate atrophy - not to mention my progressing weakness, numbness and illness over a 6 year period...

but I went to a 2nd neurologist and he was dismissive and told me he had great news I was fine the EMG's and biopsy did not matter

I just had Fibromyalgia, and that my hyperefexia and tremor, inbalence was just normal for a woman of my age..38...So I understand the feeling that it is just completely impossible to explain, one experience to someone who has deceided they know what is wrong with you.
It is hard to keep a sense of autonomy when one is so completely demeaned and given no options.