Reply To: Any experience with centers for excellence?

December 27, 2012 at 8:37 pm

Jay, I went out to the Rochester Mayo to get a second opinion to confirm my cidp diagnosis. It was nice because they schedule every test possible in 1 week and  I did leave there with a treatment plan.

But if you are looking for ongoing treatment and a Dr to work with permanently, I did not find the Dr at Mayo to be helpful. After his weekly ivig plan for 16 weeks didn’t work, I called him for his opinion regarding  rituxin. — Even though I spent 10 days in MN, had every test possible to confirm cidp and my insurance company paid a lot of money to them—he would not give me any opinion over the phone regarding treatment unless I flew back out to MN to see him again.

My advice would be if you are looking for a diagnosis or a one time consult then they are good. Unless you live close enough to one of the centers of excellency that you can drive for ongoing treatment—in that case it would be ideal if you find a Dr you like there.   Lori