You were lucky to get ‘assessed’ by such institutes?
Do keep in mind that so many of us are ‘dismissed’ from the get-go! No matter how obvious it might be that we have a form of CIDP.
Many doctors now are actively discouraged from conducting nerve biopsies and rightfully so. How that precious sample is treated and by what laboratory is key to the quality of any diagnosis. But, should only be done in everything else IS INCONCLUSIVE! Bloodwork, conduction studies, spinal work and MRI’s CTs and all can really meet the standards for 90% of most diagnosed [allowing for doctor bias and error]. Further, in the last five years? Many to most insurance companies don’t now endorse or cover costs for such nerve biopsies UNLESS all else is inconclusive, and even then mite not cover costs? Why? Because residual pain and infections from such procedures is, apparently, inevitable. I guess I was lucky? In that all my tests, and the timing of those tests all pointed to the CIDP diagnosis. The ‘standards’ as I’ve perceived them are factually pretty clear? The interpretation of those standards is far less concise by neuros doing any given diagnosis. That is why second and third opinions are often necessary. Having exausted the internet at the time I faced a possible biopsy? The more I read, the more I knew that my own instincts of NOT were right. Still am glad it is so. I hope this helps! Good luck in the long run!