Thanks Robyn - Hugs to you too! I'd like to hear how your Mayo visit goes. Jacksonville would be about an 8 hour drive for me, but I am considering getting a referral there. Duke is 5 hours, so still an overnight, so I would prefer Mayo. I went to Duke once, at onset, but they did nothing at all but review what my local neurologist in Myrtle Beach and "specialists" at MUSC in Charleston did (I lived in SC at that time). Both Duke and MUSC added nothing to my care but a lot of out of pocket $$$, to tell me we should just wait 6 months and see what happens!! Well, it's been 5 1/2 years of "watching to see what hapens"; I decided I didn't need to travel back to Due or MUSC since neither of them could explain next steps or an action plan before me putting out more $$$ and enduring the travel hardships associated with being disabled and needing assistance. So we moved to the Charlotte area of NC and hope I can get care locally without travel hardships. When we moved here, it was at the Pandemic start, and I came with a throat cancer diagnosis (long story of another MUSC error of not telling me or primary doctor of an abnormal growth they found in a CT Scan a year earlier... I found & read the test result myself when I was collecting records for my move to NC). Anyway, cancer tests and treatment became the priority for a year; so after 5 1/2 years, I have started to advocate and push more to stop the "let's watch and see what happens" and do whatever tests and explorations that might make sense to do; and, for what we just really aren't able to figure out after trying, to help provide medical guidance and therapy on how to best manage the condition. I have learned so much from this forum here, the mentors and facilitators and contributors here are so helpful and encouraging. I wish you well, please let me know how Mayo goes! Debbie