Of course they'd decline. It's terrifying. Half of our energy is spent mentally avoiding the reality we're forced to live in. The providers avoid for slightly different reasons: in my experience, the bulk of MG symptomatology is experienced subjectively, and the great majority of providers are uncomfortable with that, not to mention that such things don't fit in billing codes.
It does make you feel like you're at the bottom of a fifty-foot well and yelling at the moon. No one listens. You're lucky if your neuro does.
MG does take a lot to get used to and sometimes I think I am losing my mind while doing it. Especially when I tell others who do not have a clue on MG.. why you could can be good one min and not the next. I believe that I have finally got a good neuro muscular doc who listens.
I do so understand what you're talking about. It happens to me all the time. I also have a problem with my skin crawling it feels like there is something crawling on me and it makes my ears itch . Have you had this happen to you? Thanks!
I hesitated in posting the question cause I at first I thought what I was feeling was all just in my head. This disease plays around enough with the mind. Thank you for letting me know that I am not alone.