u/Livid-Ad6244

A relative was diagnosed with myositis (probably polymyositis, but her neurologist and rheumatologist said they couldn't be sure) and after negligible improvement from prednisone and ivig is now looking into myositis clinics and centers for additional support.

Has anyone traveled to myositis clinics at Johns Hopkins, Mayo Clinic, OHSU, National Jewish, or others? Any specific doctor recommendations? What were your experiences like? How often did you go and for how long at a time? Did the myositis clinic doctors work with your local doctors for continuity of care between trips out?