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Old 11-06-2012, 01:56 PM   #46
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

alone
I was recently diagnosed with CPEO and feel crappy all the time. I have no energy, I don't see we'll, I have headaches daily and sometimes I think my family and friends don't believe how badly I really feel. It's hard to find someone to talk to.

 
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Old 11-06-2012, 03:31 PM   #47
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

so good to hear from you. Really is!

Last edited by moderator2; 07-08-2013 at 04:51 PM.

 
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Old 11-06-2012, 03:38 PM   #48
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

can't wait. My eyes are killing me. One gal is from Ontario and has hearing loss.

 
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Old 11-06-2012, 05:12 PM   #49
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

I've got hearing loss as well. A lot of neck and shoulder pain to. The list goes on. Just feel all around crappy. Don't know how to pull myself together.

 
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Old 11-06-2012, 05:16 PM   #50
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

I also have a Blepharitis... inflammation of the eyelids. My eyes hurt so bad I want to go pluck them out

 
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Old 11-06-2012, 05:28 PM   #51
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

OMG you poor thing! I can't even imagine that ! What can they do for you?

 
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Old 02-10-2013, 06:00 AM   #52
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

silv, feeling any better? I had my eyelids probed aug. 2012, helped a bit. Lower eyelids lifts scheduled next month. how have you been? i did move from MD to FL...

 
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Old 07-08-2013, 04:14 PM   #53
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Hi, I havent been on the site in ages, how are u keeping?

hope u are well

Last edited by moderator2; 07-08-2013 at 04:50 PM.

 
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Old 07-08-2013, 04:27 PM   #54
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Jayme, how is everything with your eyes and feet?

 
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Old 07-08-2013, 04:32 PM   #55
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Silv, how are you doing these days?

 
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Old 01-19-2014, 05:31 AM   #56
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Hello!

I wanted to ask if anyone else has had eyelid surgery to help correct ptosis? The most severe way in which I am affected by CPEO is in my left eye which has become progressively more and more droopy over the last 15 years.

A year and a half ago, I had an eyelid-lift surgery. I'm not sure whether it was the frontalis-sling surgery I've heard about or not- the surgeon just simply explained to me that he was going to tighten the muscle in my eyelid. Although my left eyelid was nowhere near as opened as my right eyelid, I was happy to see so much improvement after the surgery. However, in such a short time, my eyelid has dropped down again and is just as bad as before.

I've read that CPEO gets progressively worse over the course of 5-15 years. Since I have been affected from CPEO since I was young for about 15 years now, I'm hoping that my CPEO will stop progressing in the near future. I'm getting a second eyelid-lift surgery in the next week and really hope it will have greater long-term effects.

Have any of you had surgery to treat drooping-eyelids as a result of CPEO? If so, what kind of surgery and how long did the results of the surgery last?

Last edited by Lennox1; 01-19-2014 at 05:32 AM.

 
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