This is for Jules
Sorry that you are in the "club" as the other posts state. I am new to this site also.
Jules, don't give up on finding a good Neurologist. I like to call them an "odd lot....!! Most of them do not even have a pulse it seems. Or they are just outright caustic. I went through 3 until finally getting one that is human. Empathetic, sympathetic, & very thorough. It's a frustrating process I know, but don't give up until you are comfortable with a doctor & get the care you deserve.
Which are you most sensitive to?