I think that getting additional opinions is a good idea, so you are on the right track.
According to the
PNH Support Group website, Drs. Andrew Artz, Joseph Baron, and Christopher Daugherty at the
University of Chicago have experience treating PNH. I suggest contacting them.
You are about the same distance from the
University of Wisconsin and the
Medical College of Wisconsni as you are from Chicago. You could contact those centers as well to ask if they have PNH specialists on staff. For a rare disease like PNH it's important to find physicians who understand and have treated the disease.