Has anybody been diagnosed with CPEO? (Chronic Progressive External Ophthalmoplegia) I would like to discuss this disease with people who actually are diagnosed with it rather than the countless physicians I've been seeing.
The Following User Says Thank You to jaylite For This Useful Post: Silv (11-06-2012)
I have been diagnosed with CPEO. The CPEO is a part of an underlying condition usually. I have a Mitochondrial Myopathy called Kearns Sayre Syndrome.
What are your symptoms? I have only been diagnosed in the last 6 months so its all fairly new to me too
I just noticed that you replied to my post on that other thread...thank you! I see that you answered most of my questions there too... it is great to meet someone else with this same problem - we seem to have the exact same backgrounds/symptoms: starting at 16, getting surgery at 21, eye problems related to the surgery, muscle weakness, etc...
My life is not completely affected by this other than the fact that I have very limited eye movement that gets worse each year and of course the cosmetic part (which bothers me the most!) and the fact that I'm always tired... I do try to exercise at the gym at least 2 - 3X a week - I used to dance every day in college (I went to school for Theatre) so I used to be pretty active and now I definitely feel the difference in my lack of endurance/strength. I take vitamins, specifically COQ10 but don't know if I really feel like it's working. I wonder though, how much more tired I'd be if I didn't take it... I also get EKGs done every year to make sure that my heart is functioning properly... so far so good.
As for undergoing surgery again - I really want to but I'm just as scared as you...I mentioned that "frontalis sling" procedure, which sounds a little invasive and strange to me... where the muscles of the forehead/eyebrows would be used to raise the eyelids. I have an appointment with my neuro-ophthalmologist on Monday morning and hopefully she will have more information on it. She seems to think that I look fine every time I go in there (every 6 months or so) and hasn't recommended that I have any surgical intervention yet, so we'll see. It's just so annoying that there is no information and no cure...it's such a strange and rare disease! What's most unnerving and scary is that nobody knows what will really happen or how long it will take for symptoms to worsen or how bad they might get.
What have your doctors told you about it?
I don't know if I can post this on here, but there is a Mitochondrial Disease Foundation that specifically helps people with mitochondrial diseases. It's called UMDF - you can find them online. If you are willing to, they have a way of matching people up who share the same disease so that they can support each other. I am a member and though the doctors really didn't tell me anything new, it makes me feel good to be kept abreast of new research and advances in this specific branch of medicine.
Thank you SO much for replying to my post - I'll let you know what the neuro-ophthalmologist tells me on Monday. I'd love to hear more about your experiences too...
Let's definitely not lose touch! (I hope my post wasn't too long!)
Last edited by jaylite; 03-16-2007 at 07:39 PM.
Reason: noticed a reply in another thread and adjusted/deleted questions and information
i have the same sort of problems with the tiredness etc. I go through periods where I am really bad and can barely muster the enrgy to get out of bed and then i have times where i can go to the gym every day and feel fantastic. Thankfully I am experiencing the latter at the moment so all is good.
I dont take any medication at all. My neurologist suggested coenzyme Q10 but said that it rarely works so probably no point trying and my gp said that it can tend to put weight on which i cant have!!!
I had an echocardiogram done in september and that was all ok except i have an unrelated heart murmer. i dont know whether i have to have it checked regularily or not. my gp gave me the impression that if it was ok now it should say ok (i dont really believe that though).
So do u know specifically what mitochondrial myopathy you have? My doctors have not told me too much cause they dont really know too much.
I have definently come across that foundation you mentioned but im not sure if i can register if im in australia?? i will check it out again
i find it really frustrating that there is no information on this condition too. I live in a small country town in australia so there is an extreme lack of medical resources here. i have to travel to brisbane to see my specialists and half the time i couldnt be bothered!!!
I am yet to have my biopsy cause its going to cost me a fortune to have it and the neurologist said it may come back with nothing anyway. he is a very encouraging man!! hee hee
i dont know the technical term for the surgery i had. they tightened the muscled in my eyelid through an insision in the eye lid. and i was awake the whole time!!! very traumatic! and it was the first time the surgeons had done this procedure so i was kind of a guinee pig!!
so im hoping there are other ways to do it cause this way obviously didnt work!!!
ok well good luck at your specialist apppointment. hopefully u will get somewhere. let me know how it all goes!!!
I actually had to cancel my neuro-ophthalmolgy appointment yesterday so I will get back to you after I reschedule.
That is so awful that you have to travel so far to see your specialists. I'm lucky that I live in New York city for that reason alone. I see doctors at Columbia University, where they do alot of research on mitochondrial diseases, but you know it's not much different from where you are, because these doctors who work on this stuff every day still have no straight answers - so don't worry about feeling like you're not getting enough information!
Your eye surgery sounds exactly like what I had done, but you must have been so scared that you were the first one they tried it out on! I have a problem with that eye now because it doesn't close fully at night and now there is a corneal abrasion - some days it feels like there is sandpaper in there all day long, it's so irritated.
As far as what type of mitochondrial disease I have, they didn't specify other than it's CPEO with ragged red fibers. They were able to tell that from the muscle biopsy I had 2 years ago.
I am actually now looking into acupuncture and am waiting to hear from some doctors who specialize in acupuncture to see if they would be able to treat this ...I was doing research online and noticed that some studies were done in China on people with ophthalmoplegia that had some favorable results. The thing is, opthalmoplegia can be caused by other things: thyroid disorders or lesions on the brain or spinal cord... This is definitely a mitochondrial disease and I'm not sure the patients that were studied had this. I will definitely keep you posted on everything I do!
I'm glad I saw this as I've never come across anyone else with CPEO before. There seem to be so few of us the information is very scarse.
I guess my symptoms became apparent when I was in my 20's. Left eye ptosis only, my right eye is fine but has compensated (raised too high). In my late 30's I had numerous tests with the eventual diagnosis of CPEO. I had surgery about 4 years ago but it was only partially successful in that it is still visually obvious but doesn't close entirely when I am tired or inebriated like it used to.
I had the muscle biopsy, which was an interesting experience. The sample was taken from my thigh. The surgeon was able to anaesthetise on the surface but cannot contaminate the muscle so he got so far, I said "ow!" and he told me the rest would be without anaesthetic and not to move as there was a scalpel in my leg. 2 spare surgeons and 2 nurses then pinned me to the table to stop me moving. Nice scar - I tell people it is a shark / crocodile bite. My neurologist asked me afterwards why the surgeon hadn't done keyhole surgery. Wrong person to ask and too late!
Anyway the eyelid surgeon then agreed to do that surgery and it was done under local - very scary. And that surgeon had Lloyd Webber show tunes playing in the background to calm me - it was driving me mad and the worst part of the experience.
My optician solved the dry eye problem with some drops that are thicker than normal and I used those before going to sleep and 99% of the time I have no problem next day. I haven't needed them for a while now and I can't find the bottle but they were from the US I think.
There is a specialist in Canberra, Australia, who did the original CoQ10 research, so I was thinking that if I ever decide on more surgery I should take the flight over. Queensland is my favourite place in the world (hence the nickname) so I am disappointed there doesn't appear to be much expertise there - a combined holiday / operation would be nice.
I have been taking high strength CoQ10 for about 6 months - cheapest source I found is to import it from Whole Health Products Inc, Colorado, US. The study suggested that it had to be high strength and the ones I have are 300MG (about 10 times what we can normally get here in England in healthfood shops). Not sure if it works or not but if I forget for a couple of days I feel like the ptosis gets worse - not scientific proof but I haven't cancelled my standing order.
I am really interested in the acupuncture idea - that one never occured to me but it does sound worth investigating.
One other thing - Amanda, you said you had an unrelated heart murmur - when I was a kid I had a heart murmur too - went away when I was about 7 or 8.
It was great reading your post - you are really quite funny and actually had me laughing out loud at the Andrew Lloyd Webber/doctor's office scenario. That must have been awful for you!! I guess I found it particularly funny/awful because I have a degree in Muscial Theatre and I think it would drive me absolutely mad to hear Andrew Lloyd Webber while having a surgical procedure performed on me! I also can't believe you had the eye surgery done with local anesthesia as well as the biopsy! Ugh..
I am so tired of the fact that the specialists don't know any more than we do about this disease - I spent $550 two months ago to see a mitochondrial specialist at Columbia University here in New York City and the information I got was exactly the same as I could have found on my own on the internet....
As far as the acupuncture - the two acupuncturists I contacted told me that they would do some research on the disease and get back to me and never did. I re-contacted them and now they seem to be avoiding the e-mails, so I don't think they have much to offer either!
I have an appointment with my neuro-opthalmologist this coming Tuesday and I'm going to ask her about that "frontalis sling procedure" that I mentioned before and see what she says...
Do you take any other vitamins along with your CoQ10? I've heard that it works better with a combination of other vitamins, maybe Alpha Lipoic Acid or something - not sure if I remember correctly. I'll have to try the place in Colorado and see if they're more than what I'm paying. I use the Vitamin Shoppe brand but it's so expensive.
Anyway - thanks for the humerous post! Let's definitely keep in contact about updates and such.
Yes, it is very frustrating that there is so little information. And I suspect that because there are so few of us there is very little research being done on cures for CPEO. We're not profitable So it's very useful to share with others with the same condition.
In theory all our healthcare here is free but I had to go private and was fortunately insured or I would still be waiting to see a consultant. My GP is worse than useless. Unless you already know what is wrong with you and tell him what it is! He has never mentioned the sling (or anything else come to think about it) but the surgeon who did the eyelid raise did and she wasn't keen. I've since seen on the Internet some pretty horrific results of it going wrong - rejection or contamination - so personally I don't think I would go for that though I would do the normal surgery again. Minus the Cats. Plus the sling seems to involve using brow muscles so I might end up looking even odder with a permanently raised left eyebrow. Roger Moore-style. I guess it wouldn't be so obvious if it was both eyes.
No, I don't take any other vitimins regularly - zinc when I have a cold and that's about it. But I did have some lipoic acid tablets in the drawer for some strange unknown reason. So I've just popped one and will try it out. I'll report back. I've also doubled my CoQ10 dose to 600MG to see if that has an effect - in the Australian material where it was first suggested the subject (yep only one subject) responded to the higher dose and reverted to no effect within a few days of the dose being lowered. Experiment and see I suppose - the doctors have no clue.
Pity about the acupuncturists. Let me know if anything ever comes of that. I might see if I can get any response over here.
One thing that isn't particularly expensive and that I think does have a temporary effect is RoC Protient Fortify Eyelid Lift Serum. It is cosmetic only and only lasts a few hours but OK for a night out. Though as a bloke I have to keep quiet about it so don't tell anyone I use makeup. You girls can probably be less secretive! I've tried a few but this one seems the best so far. If you've tried any other cosmetic stuff that actually works please share.
You know, the first diagnosis I got from the top neurologist in my town was Myasthenia Gravis. So, whilst CPEO is not the nicest thing to have, I was so relieved when it came through as the final diagnosis. I actually feel very lucky! And hey, we're the world experts on a particular medical condition which makes us pretty important people
Yes, the biopsy and surgery were certainly an experience! For the biopsy I took a long lunch from work to attend the hospital - I didn't realise they were going to put me on a trolley and wheel me into a theatre. This is Britain and even though it was a private insurance job it was still done in a public hospital (I don't think any of the local private hospitals have surgical facilities or the equipment to deal with anything going wrong) by their surgeons on their own lunch breaks. Not sure if they actually booked the theatre because they kept the lights off and put a guard on the door. But it meant I could watch in the light fitting reflector above me. Yuk. But worse was the shortie gown since they were going for the top of the thigh - no dignity at all! I didn't go back to work that day afterwards strangely enough! But I did walk a mile to the rail station - pretty silly thing to do in retrospect
For the eyelid surgery, again the surgeon used a public hospital theatre although it looked like a store cupboard, this time after hours. It was deep in the basement so at least she turned the light on. When it was done they gave me some icepacks but this was the British version - surgical gloves filled with water and frozen! I was going to get the bus home and go to work the next day but I underestimated that one too and ended up having to call out a friend and have a day off. You can't get on a bus with a frozen rubber glove over your eye, even in this country, people tend to stare.
I have been so slack and not posting on here for ages but i thought i would check in and found your posts!!!
I have actually found a couple of others with CPEO in my mito group so the circle is growing!!!!!!!!
I had my eyelid surgery done in Brisbane, Paul, and I was the first person that my surgeons had done that type of surgery on!! Scary and the whole business of being awake is just wrong!!! I was hysterical!! ha ha ha but im thinking about going back for it again so it wasnt too bad
Where did you find that info about the CoQ10 study done in australia? Im surprised we have actually done anything like that here.... noone here seems to know much about this sort of stuff.
there is a bit of info about this condition on the UMDF website
anyway we will all have to stay in touch.
Where did you find that info about the CoQ10 study done in australia
It took some hunting about but I found it - it was a Dr Iain Dunlop back in 1995, currently at the Canberra Eye Hospital (also the Sydney Eye Hospital). Seems it wasn't original work on CoQ10 but when I found it some years ago it was the only CPEO/CoQ10 specific study you could find on the Internet so I assumed it was where the link came from, and now there appear to be a number of other references, some pre-dating it. But it still seems the most positive! Most of the studies seem to look at doses of 150Mg or around that. Dunlop, in "Reversible ophthalmoplegia in CPEO" used doses of 300Mg, which seemed to work. When he reduced it to 200Mg the effect went away I think (not sure 100% as the study doesn't appear to be available electronically that I can find any more). So the suggestion is that low doses might not work where higher doses might well.
One side-effect of taking the CoQ10 is that I did have rapidly receding gums (sign of advancing age I'm afraid). My dentist is amazed at how they have improved. So if it doesn't help with the CPEO, at least you can have strong teeth. If it does help, 2 for the price of 1
My last surgeon said I would probably need a repeat of the eyelid surgery after about 10 years. Another 5-6 years off. By that time I hope to have made the move to NZ so if he is still wielding a scalpel, a trip to see Dr Dunlop sounds feasible. I have to say, Amanda, that you are far braver than me in being a guinea pig for your surgeon - it was scary enough without having the surgeon learning on the job
Hey I just stumbled on this forum as I was trying to find out more about CPEO. My neurologist has just said he thinks I have this and wants me to have a muscle biopsy! Only trouble is, where do they take the biopsy from and why? I hope I have done this thread right. I'm really worried here, he isnt going to take the biopsy from my eyelid is he??
I also have pain in my arms and hands on and off but I'm thinking maybe thats because I now use a laptop??
Last edited by SarahS1976; 06-21-2007 at 02:56 AM.
It's been a while since I checked in here... I had 2 muscle biopsies. The first one took place when I had cosmetic surgery on my left eyelid to have it raised... this was many years ago, but they were unable to use the piece they had taken at that time since it was too small. I never had another one done until 2 years ago, when my symptoms seemed to worsen and I just wanted to confirm that CPEO was indeed what I had. At that time, they took a biopsy from my left arm (the bicep) and they were able to correctly diagnose me with that sample. It is a small scar on my arm, a little less than one inch.
The reason they take the muscle sample is because this disease affects the mitochondria in our muscles. (The mitochondria give your muscles strength and endurance.) With a sample, they are able to determine if your mitochondria are working properly. I think the term they use for this disease is "ragged red fibers" - if your muscle biopsy shows this, then you most likely would have CPEO.
What are your other symptoms? Do you have similar ones that we've been describing in the threads above?
Good luck with the biopsy and please keep us posted!
Thank you for replying to my post.
You asked what my other symptoms are. I have bilateral ptosis for which I have had surgery 2 years ago. The eyelids have started to droop again. The consultant (who wasnt a neurologist as they didnt look for anything else) said I had very little muscle in my eyelids. He had never seen a case of ptosis as bad in a person as young as me. (I'm 31 now).
I also have bilateral firbosis (??) where my eyeballs themselves havent got the range of movement they should have. This was diagnosed recently. I have moved house since my first operation and now have a different consultant, hence the new tests and the diagnosis of CPEO. I saw a neurologist who says looking at me I have CPEO but he has to do a muscle biopsy to confirm this. The eye consultant says she'll do the eyelid operation after all the investigations the neurologist has done have finished and she will use the tendon in my wrist to lift my eyelids.
I'll keep you informed as to what happens and thanx again for replying
I'm curious to know what type of surgery you had on your eyelids 2 years ago. I had my left eyelid raised, where they tightened the muscle in the eyelid and that was about 12 years ago (I'm 35 now). But I've had complications with my eye. The thing that's happened is that it does not fully close at night since they raised it, and it's been exposed to too much air. As a result, my cornea has been damaged. It frequently feels like there's sandpaper rubbing in it and it just bothers me a great deal. The other bad thing is that the lids have gotten droopier over the years - I guess the same thing happened to you. I wanted to have another surgery, but my neuro-opthalmologist does not recommend it because of the result I had before. I also have the limited range of motion with my eyes as well...
I've never heard about the tendon from the wrist option... can you tell me more about that? And please let me know how you make out if you decide to go ahead with the surgery.
I had surgery to both eyelids to lift them as they drooped very badly. The then consultant said I had very little muscle in my eye and that I was probably born like that. This new consultant (cos I moved house) is goin to use the tendon from the wrist at the bottom of my palm. If you put you thumb and little finger together and then bend your wrist a little you can see the tendon clearly. They use the tendon instead of the eye muscle (which as i said is virtually non existant)