Quote Originally Posted by Masha View Post
Onirin,
You sure have had a long miserable journey before being diagnosed. I am glad you found us.
There are many who can relate to all if not some of your experiences.
Like Natie, my anca always reads positive. There are times it reads positive and I feel good. My doctors continue to tell me that anca is not the only determination for where I am with this condition.
This brings me to your situation, and others whose anca has read negative. Why do doctors continue to say “No Canca, no GPA”
I sound like a broken record, but I will say it again. Do not see just any rheumatologist. If you live in an area where it is possible to find one that is experienced with Wegeners, then by all means go to that doctor.
If you care to share the part of the country where you live, others will help you. Many members go to the Cleveland Clinic and see a wonderful doctor, Dr. Villa Forte. I live in the Charlotte NC area and drive a few hours to go to Duke for a specialist.
Please don’t hesitate to reach out to us.
Masha
Hi Marsha,
I read you are going to Duke to get treatment. My rheumatologist is from Greenville, SC. My ENT referred me to him. A friend asked me if I wanted to see someone from Duke, but I have not made up my mind on that yet. What is your experience with Duke?