Thanks so much, "Lemon Pepper" (great name!). As you apparently know also, I think it's very difficult to go from feeling some hope to feeling almost despair to summoning the courage to keep searching. I found this article recently from 2018, and it was very helpful to be reminded that neither you nor I nor anyone else in this situation is alone: https://health.usnews.com/health-care/patient-advice/articles/who-can-help-me-with-a-rare-disease

I have about half a dozen appointments scheduled with various medical providers in the next month. My hopes are not high, but who knows? Maybe "the stars will align" on one of these visits... (fingers crossed)