Unexplained Ptosis? Plz read! Anyone w CPEO/Plus?
I'm new to this board. I was beginning to think I was the only one with CPEO (CPEO Plus), at least the only adult with it.
It's been a long, long road for me.
For years I was misdiagnosed as having clinical MS, even though all the "experts" couldn't explain most of my symptoms. Seen doctor after doctor. Had several surgeries for ptosis (droopy eyelid), which the doctors always swore they could fix; but not one of them could, they were all unsuccessful.
None of the doctors could ever explain what caused my ptosis; although they all said it wasn't from MS.
My symptoms progressed throughout the years, and every doctor did the same thing; nothing. Nothing besides the common MS treatments- self inject shots and pills. They did nothing more because none of my symptoms fit nicely into their little list of common diseases. Some even hinted that my symptoms might be mentally induced just because they couldn't explain them, and because it was clear they had no desire to look "outside the box". I lost total interest in wasting my time and money to sit in front of all the different "expert doctors" who did little to help, who didn't care enough to search out for an answer, and mostly, who left me feeling like I was crazy.
I stopped seeing "expert" doctors, stopped searching for answers, stopped searching for the cause of my ptosis, and I suffered through life for 13 years, dealing the best I could with my "MS" and other debilitating symptoms.
In 2012, I was faced with symptoms I could no longer "pretend away" or use my "adaptive skills" to hide. My vision and other symptoms had gotten progressively worse; it couldn't be ignored; I had to seek help from an "expert" doctor.
Commuting to a Clinic in another State, after several tests, my "MS" doctor, who no longer knew what to do, referred me to a vision specialist.
The visit with the eye specialist came a month later.
After the routine examination and review of my medical history, the doctor turned in her chair and said, this looks like "CPEO Plus myopathy", you don't have MS, you're not crazy, you never were", and "CPEO causes ptosis".
Although I would never wish CPEO upon anyone else, it is my hope that someone else out there who may be suffering with unexplained acquired ptosis, who is seeking answers (just as I had), may land here, read this, and be spared years of searching. If I can help just one person by this, then everything I had to experience would have been worth it.
I hope there's someone else who would like to share their CPEO or CPEO Plus experiences and knowledge. I'd love to hear from you!
Coping with CPEO Plus
Last edited by Mlissa1; 11-14-2012 at 06:27 AM.