Yes, you must keep that 'feistiness' or nothing will happen.
You complained about your EX-doc in the best way one can, bad-mouthing some docs to other docs isn't productive [after all? They mite be golfing pals].
My line for changing is usually 'We didn't communicate that well.' and leave it at that...unless suggested to go to that doc again. About one, when I'd gotten that suggestion? I quietly replied: 'Only over my dead body'. Dislike was conveyed and duly noted.
After learning a heap of good information from folks here and a lot of reading, I've learned that some docs simply don't even try those extra steps or tests to eliminate the hundreds of neuro possibilities for such miseries. I was lucky on my second try, and it's saved my life.
With specialists? Once you go thru that first waiting period? And evaluations? YOU ARE IN!!!
Don't talk about your fears and emotions as such at first tho? Just think really hard and write out in a time-line, what all has happened to you, then when it happened, who you saw, and try and remember what tests you have had-and which docs ordered them. [This last part is the worst! I'd found I could back track via my checkbook and medical plan Explanation of Benefits {what the insurance had paid}] Once YOU write this down? You will be surprised at how much info you really have gathered together about YOU over your times with these problems starting to now.
The scariest part is the fear of IT [whatever it is?] getting worse then even more so! The hope you must keep is that there ARE good docs out there who DO listen and try to help.
I'm crossing my fingers that this Rheumy and you will be able to talk and get tests done. Be prepared for a possible BUNCH of tests to be done soon, fast and furiously. GET THEM DONE! Sooner the better-starting out on a new medical roller-coaster ride for sure. I've been on four 'rides' in the 6+ years since I started my neuropathy? And the more I learn, the more I find I need to learn more!
Let us know what's happening, and don't EVER give up! 's - j