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Old 02-10-2013, 05:35 AM   #16
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Cool CPEO not as uncommon as you might think, but yes rare indeed!!!!

Bullfinch... 30 years.. my goodness. I guess Coventry is in the UK?

Best of luck with sling surgery. I guess this is your first time having it. My eyes are super dry (Blepharitis) so don't know if i will ever get sling. Also my eyes never close fully. For now I am scheduled to have my lower lids lifted to see if that will help the discomfort and blurry vision a bit. Schedulded Mar 11 and 13. i have been told by several dr. there is nothing you can do, never had had mito cocktail, etc... i've seen some dr. who just want to help my comfort level which is nice... so glad to meet you Bullfinch...God Bless you today.

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Old 02-13-2013, 02:34 AM   #17
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Re: Is anyone else diagnosed with CPEO?

BYU1972 -> It seems that you and I both have had our first real symptoms and healthcare contacts in year 2010. I'm not experiencing sensivity to light though. Maybe I will soon... Oh my god, how terrible to be forced to have sunglasses all the time!!! What kind of job do you do? Are you working right now? I'm a receptionist at a big, global company, and I can't imagine my manager would allow me to sit at the front desk with sungalsses on! So if it would be that bad, I'd have to quit my job... I'm really, really scared for that to happen! My eyes are also kind of dry, but not so bad yet. I sit on the computer all day long in my job, but so far i'ts working ok (not good, but ok). It hurts a little in my left eye, but it's because I have a conical cornea on that eye (known only since a couple of weeks back). I don't know if it's got to do with the CPEO. Maybe. I agree, I also think that the sling surgery is my best chance in this. The only question is where I can get it done... But I promise not to rush too quick to the USA It would be great if I could do it here in Europe... Of course I can search for another doctor, but the one I have is the best! It's just that he's sooo busy... I have to be patient. Thanks for the hint to put a hot wash rag over my eyes if they hurt, I'll keep that in mind! But how come your eyes never close fully, why is that? Much love and bless to you and thanks for the link about sling surgery too!

bullfinch -> Many thanks for your post! REALLY interesting to hear from somebody who have had the disease for so long! 30 years... oh my :/ Do you live in the UK? Are you retired? How old are you? How has your life been, have you been able to work all the time? Hmm... botox injections? Did it work? And contact lenses with shelves! Wow. Please tell me all about it, I'm really interested, and desperate. My eyeballs moves fine so far... How come you've never had sling surgery before, in all these years? Good luck with the operation, I wish you all the best! At last, would you say you've had a good life, in spite of the CPEO? Please say yes, please say yes...

 
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Old 02-16-2013, 08:11 AM   #18
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Re: Is anyone else diagnosed with CPEO?

Campal Light sensitivity and computer glare issues was almost my first issue I had in 2010....b/c living in the NE part of the US... then the dry eyes started and i was in pain everday. The past few years i have been working in call centers on the phone/computer. I am trying to find another job now. However, the bright sunlight hurts my eyes. I would assume my eyes don't close all the way, because of muscle atrophy? Maybe getting lower eyelid lifts will help them to close more fully. Working even inside, there are all the florenscent lights that bother me.

I am so glad you have a good job where you don't suffer so. I'm so sensitive to light that working is going to be hard for me. God bless you and it sounds as if you are managing fine with only a little discomfort... I am envious....

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Old 02-16-2013, 08:56 AM   #19
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Re: Is anyone else diagnosed with CPEO?

BYU1972 -> I sholdn't have said anything... Today my eyeballs HURTS! It's an aching kind of pain that I almost can't even describe. I have cried a lot, and I feel that it's not fair. The whole world is against me and I'll never be able to get up! So it feels. This is only the beginning of a lifetime in pains... It's hard to be positive sometimes. As you hear, you don't have to be envious of me.

Do you sleep with eye covers (sorry, I don't know the right word)? I have to do that, cause my left eye is not closing fully since surgery. It's to keep eye humid. Do you think it will be easy for you to get a new job, considering you have CPEO? I wish you all the best! Big hug!

 
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Old 02-16-2013, 09:11 AM   #20
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Cool CPEO not as uncommon as you might think, but yes rare indeed!!!!

I do wear an eye mask. I also have swim goggles, but the area around my eye is very sensitive, so those don't work.

Anyway, i am going out to a little jewelry party and my eyelids (even after putting hot compress on) are so heavy, so i am going to take another hot shower. That will help Ith think. I often take hot baths now cause that helps my eyesfeel better too.

I have some friends in Sweden. I will ask them where exactly. Sometimes i wea two pair of sunglasses when i drive... My actual vision is not bad though. Hugs and may your eyepain be less.

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Old 02-19-2013, 10:19 AM   #21
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Re: Is anyone else diagnosed with CPEO?

Thanks to BYU1972 and Campal for your posts and sorry for delay in replying. Yes Coventry is in the UK right in the middle not an especially pretty place but handy for travelling to other places. the botox was meant to set the muscles in place but didnt work also the shelved contacs may work for some who had more eyeball movement but not for me. You ask if my life has been good and I assure you it has been I am 57 and I think the main factor in this has been my husband we have been married for 32 years in May and love each other more each year . As far as working I have worked as a childminder in my own home and also helped my husband who is self employed as a bookkeeper but he has always been the breadwinner which has been a real blessing. In Britain I qualify for a low rate of allowance which was because a year ago I was registered partially sighted due to the lack of peripheral vision. Regarding pain and discomfort I can only say I have not suffered pain too much since my lids dropped as I dont get as much dry eye , I am aware this may be worse once I have the sling op so will have to use drops all the time, the reason I am having it now is because they have dropped a bit more and also they were trying all the alternatives first. I also get a lot of double vision due to the eyeball problem which to be honest does get me down as I would like to read more but find I cant for very long ,closing one eye helps.
I do hope things improve for you both and that you have good people around you , I am sure you will have as you are caring people who will attract others who care.
\i am still waiting for my actual op date but will let you know how it goes.

 
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Old 02-20-2013, 08:18 AM   #22
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Re: Is anyone else diagnosed with CPEO?

bullfinch -> Thank you for responding! I thought you were a lot older, sorry I'm glad you feel like you've had a good life so far, what are your concerns about the next twenty years, how do you think they will be? Good? Bad?

I have some more questions, and it would be nice if you would answer (if you want to!). How old were you when you were diagnosed with CPEO? Do you have double vision all the time, or does it come and go? Can you drive? Are your eyeballs completely fixed, or do you have some movement? For how long can you read, if you close one eye? Can you watch tv without problem? Sorry for all the questions, but I really want to know... So please tell me! Thanks and blessings to you!

 
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Old 02-21-2013, 04:01 AM   #23
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Re: Is anyone else diagnosed with CPEO?

I am optimistic about the future , hopefully the sling operation will make a big difference but having read some of the posts I now realise there could be some complications but as itis my only option I want to have it done. To answer your questions campal, I was diagnosed about 15 years ago, for the previous 15 or so I was seeing an eye specialist regularly for droopy eyelids and limited eye movement but he didnt say ,,cpeo until he sent me for further tests to a neurologist who had a thigh muscle biopsy done under local anasthetic , it wasnt very pleasant but not too bad. After that I had yearly checks for muscle problems which showed facial limits, my smile is not as broad as it once was but not too bad, and also my grip is not what it should be but again not too limiting. I dont drive this is due to having to turn my head rather than quickly glance was a risk I nor my driving instructor felt was worth taking, I think this is down to each individual to decide. I dont have double vision all the time and my specialist said normally the brain compensates for the lack of eye movement, I am struggling now as I have been looking at the screen for too long, sorry but I will have to leave it for now, take care

 
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Old 02-21-2013, 07:01 AM   #24
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Re: Is anyone else diagnosed with CPEO?

Bullfinch... your story/symptoms so similar to mine. Here in Tampa, Florida, my neuro. told me he doesn't do muscle biopsys. one Neuo opthmo wouldnt' even see b/c i DON"T have much double vision. I hate driving b/c my eyeballs don't move right or left. PPL don't understand how much I hate driving. On a bright sunny day, i wear two pairs of sunglassses. I am also bothered by the computer so am having a hard time finding a sit down job b/c i have chronic heel pain. Anyway... thx for your comment... I can really relate and love your positive attitude. I dont drive at night b/c with all the glare of the lights and all plus no movement w. eyeballs... that is just too difficult and scary.

Last edited by BYU1972; 02-21-2013 at 07:04 AM. Reason: add one sentencce

 
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Old 03-01-2013, 11:52 AM   #25
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Cool Surgery coming up

having lower lids lifted March 11 and 13 2013... Upper lids haven't been done yet. Hoping this will help discomfort and blurry vision b/c my eyes do not close all the way.

Last edited by BYU1972; 03-01-2013 at 11:53 AM. Reason: spelling

 
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Old 05-25-2013, 06:00 AM   #26
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Re: Is anyone else diagnosed with CPEO?

Yes I have had ibalance problems, eye muscle weakness, weakness in arms and legs, my feet keep going numb and soetimes my hands, and get tired easily. I was tested for ms, mnyastheia gravis. I have had about four mris, they looked for nerve palsy in a mra. Now my nuero opthamologist thinks it is CPEO. I had test for gene testing the other day. He has not said anything about a muscle biopsy yet.

 
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Old 05-25-2013, 06:11 AM   #27
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Re: Is anyone else diagnosed with CPEO?

Quote:
Originally Posted by BYU1972 View Post
Bullfinch... your story/symptoms so similar to mine. Here in Tampa, Florida, my neuro. told me he doesn't do muscle biopsys. one Neuo opthmo wouldnt' even see b/c i DON"T have much double vision. I hate driving b/c my eyeballs don't move right or left. PPL don't understand how much I hate driving. On a bright sunny day, i wear two pairs of sunglassses. I am also bothered by the computer so am having a hard time finding a sit down job b/c i have chronic heel pain. Anyway... thx for your comment... I can really relate and love your positive attitude. I dont drive at night b/c with all the glare of the lights and all plus no movement w. eyeballs... that is just too difficult and scary.
I understand about the driving. Mr right eye will not move to the left and their is a delay when it moves to the right. I sometimes see cars in the other lane like they are angled and headed straight for me. It is weird. I have to stay focused when I am driving. i have two daughters so am very careful when I drive. I will actually be releived when they start driving. They are 15 and16.

 
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