Your experience reminded me of the story of Susannah Cahalan in the movie "Brain on Fire". While the symptoms aren't the same, it took a doctor who looked for the rare "zebra" diagnosis to diagnose her with anti-NMDA receptor encephalitis. It literally saved her life. Prior to that diagnosis she was at one point told she was schizophrenic and put into a psych ward. I'm not saying her disease is causing your symptoms, but to point out that getting to a facility like Mayo that have all specialties under one roof and physicians who will work together and look outside the box for rare maladies could allow the puzzle pieces to be put together. Good luck and God bless. I hope you have a diagnosis soon.