@kmg218 if you would like to try a more experienced rheumatologist, here is some information that could help.
GARD. Genetic and Rare Diseases Organization
https://rarediseases.info.nih.gov/
NORD National Organization for Rare Diseases
https://rarediseases.org/
These organizations keep a list of doctors who specialize in rare diseases. Call them and find out if your state has one of the docs!