Elle - I am also undx'd. My neuro does want to hear about and treat/test when I have new or worse symptoms. I have left neuros who dismissed my problems, and always advise others to do the same.

My problem is, it always takes 3 months to get in to see my neuro. So, I will call him, and his nurse will call me back and ask questions, talk to the doc, and the 2 of them decide what to do with me.



I also have a great PCP I can turn to in the meantime if I need to.

My SOP (standard operating procedure) has been:


Let the doc know if I want meds for this or not (he always tries to write a script whether I want one or not lol) or if I am asking if it's time for some other test to figure out why I'm having the symptom, or if I just want it noted in my file.

I always want help with the pain. Always want help with the fatigue. Don't want it for sensory stuff. Tingling is not interfering with my life enough that it's worth the side effects of a med for me, you know?

But you decide what you need to get through your day. Hope that helped some.