@rollingf Yes, thank you for your comments here. My daughter has been seen by Dr. Teerin Liewluck, who is a Professor of Neurology, Mayo Clinic College of Medicine and Science. He has performed many neuro exams on her, ordered over 30 blood and urine tests, and enlisted the assistance of various departments at Mayo, including genetics, pulmonology, psychiatry, physiatry, health psychology, and the endocrinology/diabetes/metabolism/nutrition department. She had a full genome sequencing done by the Department of Molecular and Human Genetics at the Baylor College of Medicine in Houston. She has a few upcoming appointments at Mayo in October: a repeat appointment with physiatry and for additional MRI imaging. The diagnosis has been fluid; it was first (wrongly) identified as polymyosisis by doctors at the University of Minnesota. Then the Mayo neurologist believed it was Multiple Acyl-CoA Dehydrogenase Deficiency, a rare, inherited metabolic disorder. Every medical indicator now points in a different direction; even geneticists don't know what this thing is. My daughter's managing neuro specialist is telling us it's possible she is Patient Zero for an as-yet unidentified, undefined medical condition that there's no known treatment for. Mysathenia Gravis, Guillain-Barré syndrome, Muscular Dystrophy, and ALS were ruled out by Mayo many months ago.

Thank you for your concern and for responding to my post here. In these times I find it comforting that there are people who can respond to my caregiver burnout as well as to help doctors to crack the code on this very mysterious and challenging set of circumstances.