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  • CPEO-Chronic Progressive External Opthalmoplegia 2010

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    Old 05-17-2010, 05:07 PM   #16
    kdmosley09
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    Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

    Does anyone have a problem moving there eyes

     
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    Old 05-17-2010, 10:21 PM   #17
    RenKarWil
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    Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

    Hi,

    I am 23 this year, was Diagnosed 2 years ago. Have limited eye movement both left to right and up and down. My eye site has deteriorated since my operation and i now require glasses full time.
    How old is everyone else? and how long have you been dealing with CPEO? Does anyone have any restrictions to do with this condition, as in the muscle strength and tiredness etc

     
    Old 05-18-2010, 06:30 AM   #18
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    Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

    You just have to live with it. I am able to do anything that others do, just not always as fast or as long. I have had all the test some you realy don't want to go through. I am 66 and experiance fatigue for years but did not know what it was. It started in early 2o's. I am willing to talk about it.

     
    Old 05-18-2010, 06:37 AM   #19
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    Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

    I find that light snack during the day help but a big meal gets me for the neat 45 min or more. If I stay active I am generally ok. Have had it for years and only diagnosed in the pas 6. I just know why I was different. It took 15 years to figure out why my eyes were like the are. If I am out in the cold for a long time they don't focus well till i get warmed up. I think Florada sounds great for the winter.

     
    Old 05-19-2010, 06:11 AM   #20
    kdmosley09
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    Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

    I am currently 37 tears old...I have been dealing with CPEO since I was 22...My eyemovement has gotten worst over the years which require me to wear prizimns in my lenses....I wish there were contacts that could help cause in my lesft eye the lense is very thick even with hi-index....what operation did you have?

     
    Old 05-19-2010, 06:14 AM   #21
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    Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

    I am currently 37 tears old...I have been dealing with CPEO since I was 22...My eyemovement has gotten worst over the years which require me to wear prizimns in my lenses....I wish there were contacts that could help cause in my lesft eye the lense is very thick even with hi-index....what operation did you have

     
    Old 06-04-2010, 12:22 PM   #22
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    Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

    I have recently been diagnosed with CPEO, although I am 61. An eye exam triggered the referral to a neuro when the eye doc found that I had very little eye movement. I have been complaining of droopy eyelids for some time, and do have double vision much of the time. My neuro suspects I have had this for years, but that the progression was so gradual that I thought it was normal. I had two bad accidents and surgeries in 2008, and that probably accelerated the progression to make the condition more obvious. I have also had weakness in my legs for the past ten years or so, and thought that must just be aging. I am not a candidate for the eye surgeries, but so far am managing OK without it. I'm glad to find this Board and will be interested to read more about how others are coping.

     
    Old 06-06-2010, 04:57 AM   #23
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    Smile Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

    Good morning Australia I was treated with a heart pill to strengthen my heart and the report this past week id that it is stronger. I have had fatiuge but just put up with it. I am over 60. I try not to stop. It is anoying but don't give up you can enjoy a full life with it.
    I take Q10 but I don't know how much it helps. My doctor said to keep taking it.

     
    Old 06-07-2010, 08:08 PM   #24
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    Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

    It is great to hear everyones experiences with this condition as i find it very frustrating, but do understand after hearing from everyone-you just need to deal with the fatigue and do the best i can! Does anyone suggest any food types/diets? Maybe any exercises that help?
    The limited eye movement isnt too difiicult to deal with as ive already forgotten what its like to move just the eyes and not the head also!
    The operation i had was where they insert silicone slings under the lid and up through the brow so as i raise my forehead my lids open for better viewing. This was the better option as if my body rejected them they are able to be removed! The only noticeable scars i have is where the slings are knotted on my forehead and a tiny little bump can be seen if looking closely!

     
    Old 06-08-2010, 07:18 AM   #25
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    Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

    I have limited eye movement as well...I cant really move my eyes at all...I gotten use to just moving my head now to see where I need to see...Do you where any special type of eyewear or prizimns in your lenses..Its so good to find other people with the same condition.

     
    Old 06-08-2010, 09:15 AM   #26
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    Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

    I agree that the muscle weakness and fatigue are frustrating. My neuro suggested I work on building strength in my legs with stair work, squats, and more walking. My balance is lousy, and I am trying to improve that as well. At 61 and with osteoporosis, I really need to do all I can to avoid a fall - and with vision issues, weak legs, and poor balance I am pretty paranoid. Broke two bones in 2008, and don't want a repeat of that year at all!

    I am so glad to find this resource. My migraine support board has been a huge benefit to me over the years, and hopefully this will, too.

    Does anyone else have trouble swallowing? It is apparently one more manifestation of CPEO, and has really become an issue for me in the last year or two. Large pills are literally a pain to swallow.

     
    Old 06-09-2010, 07:10 AM   #27
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    Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

    Quote:
    Originally Posted by RenKarWil View Post
    Hi,
    Thank you for your reply! I opted for the silicone slings so if my body rejected them then they could be removed and not have the muscles permanently fixed to a position. It has been a year since my surgery and have had a magnificant deterioration in eye site since having the procedure, i now have to wear strong glasses alot of the time, where before my site was perfect. Im currently only taking CoQ10 but hoping to find out more when seeing my doctor in a few weeks. My body is definately weakening/aching and sore continuously, the total lack of energy is hard to deal with, even working at the moment isnt an option physically The heart palpitations are a scary feeling also!!
    How bad is the deterioration in your eye site...can you move your eyes at all...what type of glasses do you wear...

     
    Old 06-11-2010, 01:56 PM   #28
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    Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

    Hi KDMosley

    I had the silicone frontalis sling surgery 23 years ago. Like you I opted for this "new" technique because it was reverseable. If it didn't work out I had options. I was told the life span for the silicone was going to be about 10 years so I'm continually surprised they are still in place. I thought my vision got worse but truthfully my eyelids just blocked my vision so much I couldn't tell until they were lifted. Most annoying is the double vision and lack of eye movement. I also don't have a lot of facial movement around my eyes. The most frustrating part of my problems is that people don't understand that it's a struggle to excercise. I do it but it's so hard to just maintain any level of strength. I'm 47 years old on June 20th! wooo whoooo! (not really thrilled about another year!)

     
    Old 06-11-2010, 02:42 PM   #29
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    Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

    I just had the levator tightening procedure done at Johns Hopkins - the oculoplastics surgeon said he sees several cases of CPEO per year, so likely has as much experience with it as anyone. I went with the levator procedure on his recommendation, as he said once you have the sling procedure, it makes it difficult to do the other procedures, and my degree of levator function wasnt so poor as to make the sling the only option (I guess as it gets worse, the sling is the best/only option - my mother had that several years ago and before the procedure could barely open her eyes, but the slings have worked well for her)

    So Im a week out now, and my right eye looks pretty good. My left eye has continued to be very swollen (the case since the procedure) which has made it hard to say how the procedure took to that eye. There is definitely still ptosis there, but the swelling makes it look much worse than I hope it is. I went back for follow up yesterday to get the stitches removed, and was told the swelling can last a month, so Im hoping that as the edema goes down, the lid will raise up a bit, cause right now it seems worse than before, but I know its early.. Im just very impatient (and a little nervous)!

    Has anyone else had this procedure? How long did the swelling last? Seems like most people here have opted for the sling, but Im curious if others have had the other procedures at some point.

     
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