@harley22 Great doctors do exist but they are usually in comprehensive medical centers or university medical centers. When I had an MRI to diagnose what I thought was a stroke, none of the radiologists knew what they were looking at. The neurologist thought it was either MS or Clippers (which I now have). My husband called the university hospital and had the films sent. They knew right away what the diagnosis was. To this day, I get my care from a doctor at the university.
These two organizations can help you find a doctor:
GARD, the genetic and rare disease organization. https://rarediseases.info.nih.gov/
NORD: the national organization for rare diseases. https://rarediseases.org/
In the meantime, this may help. https://autoimmune.org/resource-center/diagnosis-tips/
The article helps you organize your symptoms and problems so you can go to your appointment
With a clear focus. Will you try this? What is the main thing you want to focus on in an appointment?