@zara2021 if you are thinking of going to Mayo, you may want to work with your doctors to do so. They may give suggestions to you doctor, for what can be done locally, first. Also it help for your doctor to do an actual referral rather than you referring yourself. You might also look into the rare diseases website. I believe they can help you find a good doctor in your area
https://rarediseases.info.nih.gov/guides/pages/25/how-to-find-a-disease-specialist
Please keep me informed!