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Old 11-13-2012, 10:07 PM   #1
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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
Melissa

Last edited by Mlissa1; 11-14-2012 at 07:27 AM.

 
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Old 03-18-2014, 11:11 AM   #2
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Join Date: Mar 2014
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Re: Unexplained Ptosis? Plz read! Anyone w CPEO/Plus?

Hi,

I have CPEO+ I was initially diagnosed with myasthenia gravis it took nie years before they found what I really had. I am based in the uk but there are a lot more especially in America that have this condition. I am an adult and yes its hard to find other adults with the same condition and even if its the same we have different symptoms. Most websites are aimed at the children, I think they forget adults need support to.
I hope this helps you x

Last edited by moderator2; 03-20-2014 at 06:54 AM.

 
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Old 10-30-2014, 05:50 PM   #3
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Caedmom HB User
Re: Unexplained Ptosis? Plz read! Anyone w CPEO/Plus?

I would really like to connect with others who have CPEO. I am 47 but started experiencing ptosis and blurred vision soon after the birth of my child at 40. I also had to go from doctor to doctor and finally went to the Mayo clinic which gave me the preliminary diagnosis of CPEO after ruling out myasthenia gravis. My eyelids are covering half my pupil and it's exhausting trying to keep my eyelids open. Had a consultation for surgery and one doctor suggested a frontalis sling operation, while the other advised against it and would only do a modified blepharoplasty (simply removing some excess skin). This has really taken a huge toll on my self esteem. I don't want to see people who knew me before this happened, and I'm no longer the outgoing in a crowd of new people. I just wish there was something I could do to look better. I'd love to hear other's experiences and outcomes of surgery if they had it. I'm also curious if this ultimately affects ones ability to drive. I am the single Mom of a young child and I would like to make educated preparations should the need arise. Thanks!

 
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