My name is Nicole and I just recently underwent a muscle biopsy to see if I have cpeo. My initial complaints were headaches, hearing loss and losing weight. My dr. sent me to a neurologist, ENT, and an oculoplastic surgeon (because I wanted to get my ptosis taken care of). They all suggested having an MRI to rule anything serious out, plus a bunch of blood tests. My mri came back normal however my blood work came back with some elevated anti bodies. From then on I am an ekg, emg, needle function test and more blood work. My emg and needle function test showed something abnormal and the neurologist suggested a muscle biopsy. During all that, I also saw a neuro-opthlamologist and he said that I definitely have some unusual weakness in my eyes. The audiologist also found significant hearing loss in my right ear and my left is following along as well. All of these things have pointed towards cpeo. I feel like I am tired all the time and need to take a nap during the day. My vision seems off, like I am not judging distance side to side as well. I definitely cannot hear..which is super frustrating.
I just wanted to know if anyone else is experiencing the same thing. This disease seems very rare and is not treatable. Anyone???
Diagnosed last week
mri sceduled for 20 november. Had one in may which showed everything fine but this lneurologist wants to find something *wrong* so i have to go through it again. Blood taken last week,no reportyet. Tell me about your biopsy, please. They're going to do *that* to me (gleefully rubbing their hands in anticipation) on 5th december.
I have hearing loss, but not sure it's attributable to cpeo. Both eyelids now nearly closed, am all but blind. Have double vision if both eyes open. No onew else has mentioned that. You hear ofanyone?
Have lost sense of balance, need assistance to walk in & out of all these clinics. Am i only one?
Have spoent 6 months going to 5 eye specialists. All a waste of time, says this neurologist. Familiar to anyone?
Leeshore,
I had my biopsy done and it showed the "ragged red fibers" which is consistent with CPEO..but they also did genetic testing which showed a mutation of a gene that is consistent with a mitochondrial disease called MELAS. The biopsy wasn't too bad but super sore afterwards. My MRI showed nothing as well. Double vision is a symptom of some mito diseases. My blood work did not really show anything so that is why they decided to do the biopsy. I have heard of people having lifts done on their eyelids but it needs to be a surgeon that is familiar with mitochondrial disease.
Hope everything goes well..
Last edited by Administrator; 11-01-2012 at 01:02 AM.
The Following User Says Thank You to mrmrsczar For This Useful Post: Leesh (10-31-2012)
big
big thanks for reply (i can barely see, so navigate through my typos please. Can't seem to get the "l" out of my lines!)
for how long did the pain continue *after* this biopsyl?
My view is that at my agle--83+--there is little hope of what thes shamans choose to call "treatment" so why bother with all these costly tests for an incurable disease? "costly" probably answers that question.
Were i younger, i'd have some hope.
You have helped a lot by detailing your experience (which frightens me!) and i'm grateful for your response.
Last edited by Administrator; 11-01-2012 at 01:06 AM.
Addendum:
*This* one (doc #6) ordered MRI, biopsy, & heaven knows what else on FIRST visit, before blood was even taken, & thus before it had been analysed.
This seems either odd or ominous. [lsigh]
(these pesky "ells". sorry)
Just diagnosed. Same symptoms...Feel crappy all the time. No one really understands especially friends and family. Hard to find people to talk to. It's lonely.
My name is Nicole and I just recently underwent a muscle biopsy to see if I have cpeo. My initial complaints were headaches, hearing loss and losing weight. My dr. sent me to a neurologist, ENT, and an oculoplastic surgeon (because I wanted to get my ptosis taken care of). They all suggested having an MRI to rule anything serious out, plus a bunch of blood tests. My mri came back normal however my blood work came back with some elevated anti bodies. From then on I am an ekg, emg, needle function test and more blood work. My emg and needle function test showed something abnormal and the neurologist suggested a muscle biopsy. During all that, I also saw a neuro-opthlamologist and he said that I definitely have some unusual weakness in my eyes. The audiologist also found significant hearing loss in my right ear and my left is following along as well. All of these things have pointed towards cpeo. I feel like I am tired all the time and need to take a nap during the day. My vision seems off, like I am not judging distance side to side as well. I definitely cannot hear..which is super frustrating.
I just wanted to know if anyone else is experiencing the same thing. This disease seems very rare and is not treatable. Anyone???
I have biopsy confirmed cpeo (even without the biopsy, my neurologists were quite certain that I had cpeo because my symptoms were so classic). My symptoms basically were drooping of the eyelids and decrease movement of other eye muscles as well which happened slowly over many years. I have generalized fatigue as well. I am not sure if hearing loss is typical of cpeo but mitochondrial myopathies run across such a spectrum that its probably not completely unusual. Hope this helps.
please tell me about biopsy. There are horror stories about it. Pain, misery, having to be held down on table & so on. Could youu describe yours?
I have this to face, may rfefuse it. Must write in upper case because am nearly blind now. No real treatment appaarently.
please tell me about biopsy. There are horror stories about it. Pain, misery, having to be held down on table & so on. Could youu describe yours?
I have this to face, may rfefuse it. Must write in upper case because am nearly blind now. No real treatment appaarently.
please tell me about biopsy. There are horror stories about it. Pain, misery, having to be held down on table & so on. Could youu describe yours?
I have this to face, may rfefuse it. Must write in upper case because am nearly blind now. No real treatment appaarently.
I HAD MY BIOPSY DONE FEW MONTHS AGO FROM THE THIGH-THIS IS THE MOST COMMON LOCATION THEY DO THE BIOPSY. THE PROCEDURE TOOK ABOUT 1 HOUR AND I WAS ASLEEP THROUGHOUT (THEY GIVE ANESTHESIA MEDICATIONS THRU THE iV). I LEFT THE HOSPITAL THE SAME DAY. YES YOU WILL HAVE PAIN FOR AT LEAST A FEW DAYS- I HAD TO TAKE STRONG PAIN MEDICATIONS FOR AT LEAST A WEEK. BEING ABLE TO CLIMB STAIRS COMFORTABLY TOOK ANOTHER 3-4 WEEKS. MY ONLY COMPLICATION FROM THE SURGERY- SOME NUMBNESS IN THE AREA THEY DID THE BIOPSY- I THINK THEY MUST HAVE INJURED ONE OF THE NERVES DURING THE PROCEDURE- NOTHING THEY CAN FIX NOW! LET ME KNOW IF YOU HAVE ANY OTHER QUESTIONS
HI LEESH, JUST jOINED SO HOPE YOUR STILL CHECKING IN....I HAD MUSCLE BIOPSY SIX YEARS AGO AND JUST WANTED TO TELL YOU THERE IS SEEMINGLY TWO WAYS BIOPSY ARE DONE.....ONE WHERE THEY PUT YOU UNDER AND YOUR OBLIVIOUS TO WHATS BEING DONE AND THE OTHER WHERE THEY DON'T PUT YOU UNDER......MINE WAS WITHOUT BEING KNOCKED OUT AND LORDY LORDY IT HURT SO IF YOU HAVE NOT HAD YOUR YET MAKE SURE YOU ARE GIVEN THE OPTION OF BEING KNOCKED OUT IF THAT'S WHAT YOU WANT. I WAS NEVER GIVEN THAT OPTION AND DID NOT KNOW IT WAS AVAILABLE SO IGNORANCE WAS BLISS AND OFF I TODLED ON MY OWN TO HAVE IT DONE AND WAS SURPRISED WHEN BEFORE I WENT IN TO HAVE IT DONE THAT BECAUSE I LIVED ALONE THEY WERE ADAMANT THAT I SHOULD NOT GO HOME UNLESS SOMEONE CAME TO STAY WITH ME OR I GO TO STAY WITH A FRIEND, I WENT TO STAYWITH A FRIEND FOR A FEW DAYS AND AFTER I HAD IT DONE I KNEW WHY THEY WANTED SOMEONE TO BE AT HOME TO GIVE A HAND ONCE I HAD IT DONE! IT WAS NOT A PLEASANT EXPERIENCE AND DO WISH I HAD KNOWN I COULD HAVE HAD DONE KNOCKED OUT! SO IN A NUTSHELL IF GOING UNDER IS SUITABLE FOR YOUR HEALTH CONDITION CONSIDER IT........I DID GET A CONFIRMED DIAGNOSIS OF MITOCHONDRIAL DISEASE AND DO HAVE CPEO WITH PTOSIS........I WAS REALLY SHOCKED TO GET DIAGNOSED AS I HAD HAD A FEW YEARS OF BEING TESTED FOR DIFFERENT THINGS WITH NEGATIVE RESULTS AND WAS SURE THIS WAS GOING TO BE ANOTHER NEGATIVE BUT THAT'S WHERE MY MEDICAL JOURNEY TOOK A DIFFERENT JOURNEY AND ON IT GOES. GOOD LUCK WITH YOUR JOURNEY AND DECISIONS.
Thanks for your answer. I'm discouraged to see that it joins the long line of horror stories. I would definitely, now, opt for being put under during the unholy process. However,. I wonder if the recovery would be just as bad as yours was, requiring someone to help you? Probably it would. Do you agree? Do you know of anyone who allowed this biopsy but was anasthetized during it who needed daily help afterward? I've read some people here who mentioned pain during recovery.
For time being, the biopsy has been avoided. Not sure now that i'd even allow it. Again: Many thanks. Everything we can learn about this is a help. Victims need to be warned!
Fiirst.... I have gone through exactly the same thing. Eyes began to droop and all the stuff happened quick and you read and research (I had to do that because most doctors and the medical community is NOT your advocate. CPEO is so rare. When i have been to my doctors, I am the only one they have treated with this diagnosis (they have heard of it though). In 2009 my husband and i moved from Florida to Maryland, and in 2010 I began to have horrible sensitivity to light and when my mom visitied she noticed my eyes were droopy then the light got so bad and in my job I started wearing sunglasses, dark ones.
When my regular eye dr, sent me to an occuplastic surgeon to get eye lifts, the dr said "why don't we find out why your eyelids have begun to droop" This is when i first heard the name CPEO (I did tons of research and freaked out, esp. since there is no cure or treatment). My eyes were so dry, i cried and cried everyday. I hated to drive, esp at night (I no longer drive at night), and read about all these ppl who have all these other problems.... leter....
At the end of 2011 I couldn't bear being on the computer anymore all day with all the overhead, florescent lights, and moved home to Florida where the climate is warmer and the humidtiy is high ...ok enough about me (so boring)... i'll tell more of my story later... now you... Girl, the sling (I havent had it yet) is probably your best bet. CPEO is a neuromuscular disease,,, so most likely there is no muscle to hold your lid up once you got it lifted.
I am so sorry you went through the ordeal with no result. If your dr. is busy, i would search for another... you do need to be your own advocate but dr. are here to help us. You may need to travel? i am waiting for your reply.
much love... I am sure you have used a hot washrag to put over your eyes when they hurt? that helps me ... I am waiting for your reply We are in this together...
Last edited by moderator2; 02-10-2013 at 07:36 AM.
Hello everyone
I only found this site a few days ago and am amazed. I have had cpeo for over 30 years and never met or heard of anyone else with it so it has been a real eye opener [excuse the pun] for me to find people who share my experience and understand some of the problems . I must say to start with I do have a lovely family who are a great support and also all in the medical profession I have been in contact with have been very interested and as helpful as is possible with this unusual situation.
In the next month or two I will be having the sling op I have had the pre op but am waiting for an appointment. over the years I have had props botox injections in the eyelids and also contact lenses with shelves on them but due to hardly any eyeball movement all caused bad dry eyes and were unsuccessful so this is my last hope. To end on a positive note as I am running out of space, it is a very slow moving disease and neednt stop you living a full and happy life if you work round it, if I can help in any way please ask. I have two grown up sons by the way who do not have cpeo.
The following user gives a hug of support to bullfinch: Campal (02-11-2013)
The Following User Says Thank You to bullfinch For This Useful Post: Campal (02-11-2013)
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.
Last edited by moderator2; 02-10-2013 at 07:34 AM.
The Following User Says Thank You to BYU1972 For This Useful Post: bullfinch (02-13-2013)
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...
The following user gives a hug of support to Campal: BYU1972 (02-16-2013)
The Following User Says Thank You to Campal For This Useful Post: BYU1972 (02-16-2013)
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....
Last edited by moderator2; 02-16-2013 at 08:14 AM.
Reason: posted disallowed website
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!
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.
Last edited by moderator2; 02-16-2013 at 09:12 AM.
The following user gives a hug of support to BYU1972: Campal (02-19-2013)
The Following User Says Thank You to BYU1972 For This Useful Post: Campal (02-19-2013)
Is anyone else diagnosed with CPEO? 
the last two years have been busy for me too! 
Re: Is anyone else diagnosed with CPEO? 
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!
