Stay positive!!! There is not a lot of information regarding this disease but find as much info as you can,ask questions and look for support groups . If you do not feel comfortable with your doctor please seek another doctors opinion. I was not comfortable with my first specialist and was fortunate enough to find one of the best and knowledgeable in this area.
I was fortunate to have an excellent family doctor whom I trusted with my life and he pushed for me to get a good specialist. I trusted my doctors because they were able to find what was wrong so I felt comfortable to trust thief advise and treatment .