So sorry you are going through this! Have you been referred to a Neurologist? Has anyone ordered blood work to check for Neurological syndromes and diseases? Any skin biopsies? I would seriously ask your doctors for a detailed treatment plan. If they seem lost and unmotivated to seek the answers you need, start looking for a new doctor. Maybe consider a video consult with Mayo? The one good thing about COVID is that video consults became mainstream and access to world class doctors became available to anyone with access to a computer and internet.