Hi,
Thanks for reply. I did not realise I posted to patient to patient forum. After your reply I started to post in doctor
Try to post your question on the board where the Cleveland Clinic doctors reply. Hard to get in there, but keep trying. They may be able to respond to some of your complicated questions. Maybe she should try and get in at a large teaching hospital like Cleveland Clinic, MD Anderson or Mayo. There are many good ones all over the country so you could try for one close to her. I long for the days that all I had to worry about are the silly things. Best of luck in your quest for help.