@beccamarieg Finding the right doctor seems almost impossible, doesn’t it. Here are some resources you can try;
NORD. National Organization for Rare Diseases. https://rarediseases.org/
GARD Genetic and Rare Diseases. https://rarediseases.info.nih.gov/ The organizations have similar names but are totally separate. They both have lists of doctors who specialize in autoimmune diseases. The Autoimmune Association. https://autoimmune.org/autoimmune-awareness-month/ Has lots of information and probably a doctor list also. You may have to make a special trip to see one of these doctors, but . . ..
I know that tomorrow is Saturday, but try looking at the internet sites to see what you can learn. Please stay in touch. I’d love to know what you learn!