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Old 09-04-2011, 01:35 PM   #31
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Even though he is a good surgeon mine did not seem interested in looking into the condition for me/with me. But i've done it myself now as many of us have had to do.

Just going through the UMDF site now, looks quite interesting. Another problem i have to contest with is the conference being in US, im from UK and there is nothing as big here.

On another note, anybody been diagnosed with depression because of their CPEO, i have a couple of months ago. Had the last week off work because of it. Long story cut short i went to a nightclub with friends and they wouldnt accept my ID and wanted a drivers license (which i dont have because my eyesight/ peripheral vision is so poor so i can't drive) so as my friends had all paid entry fee to the club i waited outside, for about an hour in the rain! Hence why it started my depression off lol.

 
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Old 09-04-2011, 04:38 PM   #32
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

that was very rude of your friends, so your 20 and don't drive. I'd be depressed too. I'm so sor.ry. Gosh my CPEO buddy. I was probably depressed from October to May of this year. I'd go to work and come home and call my mom and cry for a few hours. I went to Hopkins and they said I clinically had cpeo and if i need to have frontalis sling (where they add sillicone strings for you to lift your eyelid with eyebrow) to wait and get that done later. dr was nice but I got no info (except to say that a week bf I had gotten another opinion from another neauromuscular dr that said he would do lower then upper lid lift,, hopkins said don't do that cause my eyes are so dry.

 
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Old 09-04-2011, 06:27 PM   #33
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Well theyed already paid like £25 entry between them. And it was my idea for them to go in, i have enough with my disability affecting me, i don't want it to affect their night out as well, why should it.

Last edited by moderator2; 09-04-2011 at 06:31 PM. Reason: please do not post your personal information on the public message boards

 
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Old 09-05-2011, 01:03 PM   #34
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Been to the doctors today and he's prescribed me with eye drops to hopefully reduce my dry eyes. He's also sending me for an ECG, Spirometry and blood test to test for diabetes. I'll let you all know how they go. Just proves having the research at hand for him to read works and you should push for what you think you need.

 
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Old 09-05-2011, 04:35 PM   #35
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Thumbs up Re: Chronic Progressive External Ophthalmoplegia (CPEO)

yes good you went to dr. Mine weren't much help. I was tested for diabetes a few years ago, i'm not on disabiity, must work. Hoping to teach english as second language when i move back to FL in a few months. My eyes have hurt really this weekend.. slept a lot this weekend (long weekend in the states b/c of Labor day). I love to go to sleep at night so then I can close my eyes.
more later brother dan, <3 byu

 
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Old 09-06-2011, 12:46 AM   #36
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Yes he was actually a really nice doctor. He said he couldn't prescribe coq10 etc because he'd need a recommendation from neurology (who i was already seeing on the 29th September anyway) but hopefully they say yes.

I am on a small disability supplement but i still have to work also. To be honest I prefer to work, even if i COULD get loads of benefits and not work, i still would. Otherwise that's just admitting defeat to CPEO which I will not do.

I keep losing a lot of my things because of poor eye sight does anybody have any experience with key locators etc? There are a lot of the market and wondered if anybody had found any decent ones? Thanks.

EDIT: Just been for my ECG and they said it was all fine. However, he said it would explain why i'm getting palpitations before sleeping and my leg spasms. However he did not mention them at all so i will be returning for an explanation. I think it's high blood pressure for the palpitations but don't know what is causing the leg spasms.

Last edited by lorddan01; 09-06-2011 at 04:50 AM.

 
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Old 09-07-2011, 08:06 AM   #37
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

lorddan, i also lose things, misconstue cell phone numbers, choose wrong clothing sizes, however per my eye dr. my vision is still good, whatever. My dry eyes / light sensitivity is so bad, i wear Navigator type sunglasses inside at work. Damn Florescent lights kill me. I've not heard from many who have such horrid sens. to light (florescent light/computer). I'm at work now and have anti glare screens but even with drops, eyes are stinging so bad. I take ibuprofen all day b/c that is the only thing i know to do, b/c drops don't help, take hot showers letting room steam up. SUX big time. i have heard in the us it takes over two years just to apply for disability and I feel i can work, just have to find something w/o 8 hrs a day on computer and without all these bright lights. What a waste. Plus, even when it is 60 degrees fareinheit, the blast a/c which is not good either for my eyes. I try to think of how much worse this could be, and how blessed I am... but when my eyes start to hurt with no relief... I get very angry ....

 
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Old 09-07-2011, 08:12 AM   #38
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Quote:
Originally Posted by BYU1972 View Post
lorddan, i also lose things, misconstue cell phone numbers, choose wrong clothing sizes, however per my eye dr. my vision is still good, whatever. My dry eyes / light sensitivity is so bad, i wear Navigator type sunglasses inside at work. Damn Florescent lights kill me. I've not heard from many who have such horrid sens. to light (florescent light/computer). I'm at work now and have anti glare screens but even with drops, eyes are stinging so bad. I take ibuprofen all day b/c that is the only thing i know to do, b/c drops don't help, take hot showers letting room steam up. SUX big time. i have heard in the us it takes over two years just to apply for disability and I feel i can work, just have to find something w/o 8 hrs a day on computer and without all these bright lights. What a waste. Plus, even when it is 60 degrees fareinheit, the blast a/c which is not good either for my eyes. I try to think of how much worse this could be, and how blessed I am... but when my eyes start to hurt with no relief... I get very angry ....
Gosh, that sounds awful. *Big huggs* My eyes water loads anyway but in winter with the wind etcs its even worse so i can imagine with air condition on in summer and the winter coldness you eyes must be hurting all the time.

 
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Old 09-07-2011, 08:19 AM   #39
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

thx for hugs i'm moving from North to South states (FL) in hopes, that warmer weather will be longer and i will have heat and humidity in the summer where it is dry in the North. so you have dry eyes but they water? do you have light sensitivity?
gosh, you are a strong man for going thru this all your life . there is a lot i wouldn't have done if i got this when I was born. I did have really bad lazy eye and had surgery at age 2, probably with stress and moving to MD 2 years ago, no friends, family or support, CPEO presented itself with a vengence, that is my theory at least. Apparently i have little eye muscle movement (esp in left eye) for many years, droopy eye is new and light sensitivity till show itself till I moved here. I wonder.

 
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Old 09-07-2011, 08:25 AM   #40
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

A few people have said its amazing how i get through it but its just normal to me. The only difference is my routine is different than other peoples. I get on with life the same as other people do, the only good thing is mine isn't fatal.

My eyes produce tears that are of no use for lubricating the eye because they are so watery. Therefore to compensate my eyes produces way too much of this watery liquid (instead of normal, thicker, tears) to keep the eye lubricated so it doesn't get ulcers/abrasions.

I was lucky in one way that it happend at birth because I didnt have the stress etc like other people because i have no choice in having the operations.

EDIT:

I also had really bad lazy right eye but they have tighted the muscle and it is about 1/50th of the unconcious movement than before which is reallllyyy good.

Obviously i have no vertical movement but they do move slightly left and right, but its a bit useless as my peripheral vision is so bad theres no really point in moving my eyes left and right!

Last edited by lorddan01; 09-07-2011 at 08:27 AM.

 
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Old 09-07-2011, 09:01 AM   #41
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Wow, that is a great perspective... You have never known life w/o CPEO. I llike that!
i hate my droopy eyes and recent dr appt in may said DOn't get surgery now, WAIT, I guess i wait till i can't see? Don't know. Looking forward to hopefully finding a job without so many florescent lights, maybe teaching esl as I said. I've heard ppl with droopy eyes have had numerous surgeries, I'm lucky b/c i've had no surgeries really yet. When I went to hospital in May, i asked them what i could do for my eyes cause they hurt so bad, they told me to blink a lot? Really?

 
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Old 09-07-2011, 05:09 PM   #42
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

A quote from an article i found while doing research about my CPEO

"These findings suggest that the brain stem reticular network is in a state of basal inhibition which is presumably due to a subclinical impairment of the cerebral cellular metabolism. Multimodal evoked potentials revealed abnormalities suggestive of CNS involvement in 7 out of 17 patients (41.2%), 4 of whom had CPEO. These observations document the validity of BR in detecting clinically silent brain stem impairment in patients with apparently pure MM and provide important clues for a further understanding of the underlying pathophysiology." (Can't really post the whole article but it was baiscally saying that people with CPEO could develop a lower amount of blinks than other people. This is also why im assuming my eyes water alot because i don't blink. (added to the fact that people on computers blink a lot less than other jobs, you should really get it checked out).

Don't know about laws in US but in UK people using computers are told to have a break every soft often away from the screen so as to not damage our eyes.

So tell your doctors that you can't be expected to blink more as you don't do it enough as it is! Not sure if i can post the link, (admin i'd like an snwer please)

Not sure about the medical care in the US but I've had 4 operations to reduce my droopy eyes (about to be a 5th in October) but, all you have to think is that it can be done. Could be very expensive in the US but it can be sorted and surprisingly the result just looks the same as people with "normal" non droopy eyes.

Last edited by lorddan01; 09-07-2011 at 05:11 PM.

 
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Old 09-08-2011, 08:40 AM   #43
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

yes, i think their crazy but what i do try to do is stay off computer at home and i sit in darkness, go to bed early with eye mask on my eyes. I also try to look away from the computer when i'm not needing it (at work)... eyes droop so badly with all these lights and computer. hope you are having a good day.

 
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Old 09-18-2011, 08:26 AM   #44
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

I wanted to reply directly to Msbnana but don't know how!


Hi Msbnana,

Not sure you are going to see this because I notice you only posted once and that was a few months ago.... Just wanted to tell you that when I read your post about your experience with CPEO, I couldn't believe how similar my situation is! I'm also an actor and it has plagued me so much!! You are so right about how it affects us in many areas of our life but in this one in particular. I am unable to show any emotion like surprise or shock because I have no ability to open my eyes further than they are. I hate it so much and hate even more that there is nothing to do to help us.

I'm 39 and was diagnosed like you when I was 16 because of a left ptosis. I had that eyelid corrected when I was about 21 and it's since given me trouble with corneal abrasion since it gets dry. I have terrible light sensitivity and am exhausted all the time. My right eye is now droopy as well but left it still worse. Was wondering what your experience was with the frontalis sling procedure? Would you recommend it to others? Also - how is your dad faring with the disease? I am so worried about what is going to happen as I get older with this....

Anyway - it was so nice to read such a similar case scenario as mine and wanted to reach out to you... hope you are doing well and I hope you read this! :-)

Last edited by jd920; 09-18-2011 at 08:40 AM. Reason: wanted to reply directly to another member

 
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Old 09-30-2011, 07:16 AM   #45
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Just to update:

I went to see Neurology specialists yesterday and they said my tiredness could be caused by a problem with my left ventricle of my heart and they are sending me for a heart ECHO to see how it all looks.

They also said that the whole problem in itself could be related to possible brain pathway problems so I will be having a brain MRI soon.

As a side note I was also diagnosed with asthma and a slight blockage to the airways on Tuesday! It's nice to finally have some explination to my lack of lung improvement after running etc. But on further research MM patients have substantial and sustained amounts of lactate during exercise. So even with an inhaler my fitness problems wont subside. However, as i've always said, suck it up get on with it!

Will update later when i get the results.

 
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