Ed - My doctors never really asked for much of my thoughts on causes really. When I tried to suggest something, I'd get an immediate and almost definite "NO, IT WOULDN'T BE THAT" while I would then wonder why they were so certain when they had no answer on what it was. I felt like there was a standard checklist of tests & scans and labs to draw, and if no answers, then Idiopathic like most PN's, so next case please. I still believe I'm the only person in the world without an MRI though 🙂 (I wasn't able to have one because of metal in my body until I had it removed 3 years ago, but now they say getting an MRI won't offer different information).
I realize we're not the only ones exhausted and frustrated; our doctors are too. The medical "business" and financial pressures have changed healthcare a lot too. But connecting with people here has helped turn my focus into doing what I can do to help myself live with what I've been dealt. I try to stay positive as much as I can and as hard as it can be. I remind myself many times about what you've drilled into my head to focus on what we CAN do. Recalling those dark months of when I couldn't hold a fork to feed myself or needing people to do things for me more humbling than that makes proud of what I've overcome and determined to stay in control as much as I can. But it takes some effort and positive energy, and some occasional kicks in the butt!