Sorry to hear you're going through the process and finding out you've got CPEO. I can only encourage you that it sounds like you're seeing good doctors if you're even getting a diagnosis. So many of "us" have had to go through many many many doctors visits over the years when little was known or discussed about this problem.
Before going into what CPEO is I would encourage you to read the other posts on CPEO on healthboards. Just put CPEO into the search bar at healthboards and you'll get some of the closed postings... very informative and this will give you some background on a lot of the participants backgrounds
Hope this helps you out. I'll be happy to answer any questions you might have also. I had CPEO's onset right around your age as well. Doctors still aren't sure if my condition is more "Kearns Sayre Syndrome" or CPEO etc...
Good luck and we'll talk to you soon.
Originally Posted by Nat101