[Hopeful]

Hi mola-tecta,

In addition to calling the Cleveland Clinic, I'd call her current clinic and request a second opinion with the expert doctor. Don't say you are considering switching doctors, just say that you are seeking a second opinion from an expert in this rare disease.

I was also initially treated at a clinic where the doctors collaborated. However, in my experience, there is a difference between listening to a case and owning it. I found that doctors would not interfere with the treating doctor's protocol unless they were called in officially for a second opinion.

If you like the new doctor, ask at the appointment if they would take your mother on as a patient. If you don't like the new doctor, just continue on with the old one after the appointment.

If you get both appointment requests (Cleveland and local expert) rolling at the same time, you can always cancel one if the other works out.

Good luck - I know this is not easy!