This is my first post here and I would like to chat with people who have or know about Chronic Progressive External Ophthalmoplegia (CPEO)
I am a 49 year old female who first started showing signs of hearing loss at the age of 42. because I had bactierial meningettis back in 1995 all dr. said the hearing loss was probably from that or the medication I was put on at the time. Then I started getting double vision, I thought that was from new glasses. I was also having a lot of head pressure on the right side of my head. I knew something in my head was just not right. In total I have had 4 MRI's and 1 ct scan all showed nothing. I was just living with this. I started wearing hearing aids and talking to my hearing dr. about the pressure in myhead. He suggested I see my family doctor again and request to see an ENT Specialist, I went again to a new doctor who sent me for tests, and to an ENT. The ENT said that my hearing could be related to the nacterial meningettis but he doubted it. So again back to square one.
Oct 31 2010 I hear this loud noise in my right ear and within seconds I can't hear. I faxed the ENT he called me Monday morning, wanting to see me. I went in had a hearing test, still NO sound. He tried me on Prednisone took 82 pills for about 3 weeks went back to him, still can't hear but the pressure and the headaches are pretty good. For the first time in month I am not waking up from sleeping on my right side with the feeling that my brain had shifted. He sends me for another MRI. Those results say I have a small benign tumor on the left side of my head and we will keep an eye on it with further MRI'S. He also said that I have SNHL hearing loss.
My family doctor sent me to see a Neurologis, this lady did some test and said I think you have Chronic Progressive External Ophthalmoplegia (CPEO)My eyes dont go over as far when looking side to side as they should. She said this can also cause hearing loss. She sent me to an opthamologist, he did some test and said he is pretty sure that is what i have. I am now waiting to see a neuro opthamologist as this specialist and the Neuroligist want me to have a muscle test done. I do ave weakness in my arms and legs. So far I have No droopy eyes. I am still suffering with the headaches, they seem worse if I get the least bit stressed out or tired.
Please message and share with me.
xoxoxo lots of love and empathy my friend. i am 39 and was diagnosed with CPEO and have to see a Rheumatolist. My eyes have been drooping probably for the last year or so and light sensitivity the last 18 months has gone from bad to unbearable (esp computer and florescent lights). I have not had the hearing prob. etc but it is a big blow and along with Plantar Fasciitis (i got that about 18 years ago), I now have CPEO, it sucks espc. the drooping eyes and went to hospital and they said b/c dry eyes, no surgery until lid almost completely closes.
so, all this sounds like a big blow to you to. How are you coping, how many Dr have you seen. i've seen four and i guess my new dr (Rheumatologist) will be five.
Hi thank you for getting back to me. I hope you get this. My first time here and my first reply! lol
I had a heel spur a few yrs ago and had 2 Cortisons shots and they where amazing. Really helped the heel. Just have a bit of one there that hurts once in a while but nothing like it did. I also take b12 shots every month.
Like in my post I started getting the hearing loss then the double vision.
It has taken 7 yrs for these dr. to finally tell me I have C.P.E.O. I think so far not including family dr. I have seen 4 doctors. I am waiting to see a neuro ophthalmologist.They want to do a muscle biopsy, this will be my 5th specialist. I don't have the droopy eyes yet (and I pray I don't) but to read or write I have to close one eye to avoid the double vision. My eyes don't move all the way to the sides. Its my hearing that I have a really hard time with. I have none in my right and lave lost about 60% in the left. It is so hard to communicate with people and when you are out and its loud the hearing aids turn all that noise up so you can hardly hear people. They help a lot, I would not get through a day with out them but they are by far as good as your own hearing.
Please keep in touch with me, its nice to have someone to chat with that has this same problem.
Do you know what any long term effects will be. I at times can see the struggle getting up the stairs and my arms are weak. I am concerned about having to be in a wheel chair one day if I loose a lot of leg muscle.
J, yeah, i've just gradually gotten droopy eyes last 18 months. Dry eyes are my biggest problem. I do worry about being in a wheelchair esp. since I have Sjogrens. Before I was diagnosed, I did lots of research and read case studies and one lady ended up in nursing home. She was 50 something. For me I cry all the time so plan to ask Dr for some type of lift (mood). I'm thinking a lot of arthritis and also I have big time neuropathy in my feet, lower legs. When i talked to Dr. at hopk, he really couldn't answer my "future" questions. He said this disease is so rare it affects everyone differently. I have a lot of feet weekend, neauropathy, droopy eyes and limited eye movement. You have the hearing loss and the beginnings of eye issues. Let's hope no droopy eyes for you. My eyes are burning honey, this computer is killing me.
I wish we could form some type of support group or something. I know so many who are suffering in different ways, divorce, custody battles, loss of employment, etc. Trying hard to be thankful and not think about the future since I dont know what is going to happen. I don't have much muscle weakness that I know of but I do feel a bit wobbly when walking sometimes when wearing anything but tennis shoes. but it is becoming challenging to do my little Pilates routine (beginning- stretching mainly).
quick note, my first neauro-opth/occuplastic surgeon I saw... did eyelid biopsy (result inconclusive) but from what recent dr said, a biopsy could be done on thigh, to know for certain, but since i was diagnosed with CPEO and there is no therapy or cure... I probably won't bother. Also regarding eye surgery to open my eyes up, b./c i have severe dry eye, frontails sling surgery was recommended by two doctors, however recent visit to H, said i should wait till vision is almost totally blocked b/f I think of getting frontails. I did go to an Occuplastic Surgeon/Neauromuscular in fl, and he was ready to do lower then upper lid lift, NO NO NO... I've read good and not so good reviews on Frontails sling. I wonder how long I need to wait and i feel my eyes are pretty droopy already. I'm glad I recieved several opinions.
Hi, Oh I am sorry to hear that you cry all the time. Yes you need an anti depressant or something. Ok since I am so new to all this please explain what the eye sling is all about I have read on here a lot of people talking about that. Just not too sure what it details.I find myself withdrawing from people due to the hearing loss. I have become quite the loner. I am still working (I am a PSW) and pretty much doing 40 hrs a week but I am tired, very tired.
From what I have researched it seems most people have the droopy eyes. Not anyoe has mentioned the hearing loss. And yes I have read it is very rare and Dr. even don't seem to know much about it.
I also get all this noise in my deaf hear, like music, a thump thump thump, ting ting ting, drives me friggin mental.
The bottoms of my feet are puffy ususlly in the morning then that goes away, but I can go off balance anytime when walking. How do they do the muscle biopsy, any idea?
Where do you live? A support group would be great. But even this helps. Glad to be talking to you and hearing how you are coping.
Do u have a feeling in your eyes like grit or sand? I have read that people with the dry eyes can have that too.
Well thanks for the message, keep in touch. I hope you have a good day! Try to keep your head up. (hugs to you)
Last edited by moderator2; 08-24-2011 at 08:01 PM.
First, i am at work now, wearing sunglassed b/c my eyes hurt and are burning. I have some good days and some bad days. Yesterday my eyes didn't burn at all so I wore my regular glasses but today... eyes are burning. Yeah, CPEO is so rare, it is one of a dozen rare gentic mitochondrial diseases. Yeah, i'm not a cryer usually so I've been calling my mom cause I come home after work and eyes are droopy and sting and I don't know what is going to happen with muscle weekness or fatigue... so anyway... Also, i know so many others who are going thru their own trials as I mentioned and I am a Christian, I am just longing for support and empathy. so, Frontails Sling. Aparently they use muscle to do the lift and you use your eyebrows (I think) to lift your lids. I was already to go to this dr. in Tampa to get the lower then upper lids lifted then H dr told me no, to do Frontails Sling. I think with CPEO, that is the preferable surgery....
so i go to Rheumatologist Friday and I feel very very old. I have to be thankful that I have my vision and i'm hoping some happy pills will give me a boost. also as i said b/f i think crying might possible be drying my eyes out more, not sure about that though. This all happened rapidly after about six months after I moved from TPA to MD. So maybe stress (also it took me a good four months to get a job- I did a bit of crying then too- till i got my job). then probably that winter, eyes began to droopy a tad and eyes b/c sensitive to lightn then not till about six months ago till work b/c difficult with computer. So, I'm trying to do a 180 with my attitude but i'm having a hard time. esp since was recommended no surgery for now and there is no cure or treatment. I'm so sorry about your hearing, that must be so hard, b/c that is an unusual symptom that I haven't heard anyone having.... I really will be praying that your eyes don't droopy. I'll be anxiously waiting for your next support post for me i love you CPEO sister lol
Hi There, Hope you had a good day!!! Mine was good! I called to see if the specialist had heard from the specialist who is doing the muscle biop. Nothing yet. Hopefully soon.
My mom and sister don't want to think I have this cpeo, yet 2 specialists say looks like. They(family) are both wanting conformation when I have the muscle biop. done. I was told by two nuroligists and have read on the net that this can cause hearing loss. Everything is just so rare.
Are you married single?? Do you have support outside of here? How did you find the other people with cpeo?
Well I am going to go and eat some dinner.
Oh do you get a lot of headaches? I do...some mornings I wake and feel like I am going to be sick to my stomach. It takes hours for it to finally pass. Needless to say when I wake like that i miss a day of work.
Love ya back there cpeo sister!!
Last edited by moderator2; 08-24-2011 at 08:01 PM.
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The following user gives a hug of support to jayme13: BYU1972 (05-26-2011)
J, i am married, this is year 10. He doesn't really understand and can't help but try to keep the lights he turns on to a minimum. He was able to go to H with me along with my mom (who, to answer your ques. she FLEW from FL to MD, just for my Hopkins Dr. Appt. So I guess I do have support. I have on facebook, but b/c computer bothers me so much, i try to stay off it after work. I wish we could get together at some mtg point and meet up, anyway, what kind of muscle biopsy (in the corner/white part of the eye). One dr did eye lid biopsy but according to one current dr i've seen, a thigh muscle biopsy can me done to confirm. Just pls make sure your lab goes to somewhere close and if the biopsy is sent for further... make sure a frozen sample is saved b/c the new lab will need it. when i had my eyelid biospy done, apparently the lab here locally "processed" results those results were sent to mayo and they needed frozen sample. Results were inconclusive but wish i would have gotten the biospy done somewhere else. Also, my family wants me to get thigh biopsy but since two dr. (like you) said I have cpeo (not just suspected), one said clinically I have CPEO, I'm not going to bother now. esp since no cure, no meds and dr said don't do frontalis sling surgery now, and we have no idea what symptoms will apprear and how soon or when. i'm not going to bother. talk soon my friend
Good to hear from you, I was off work yesterday and took today off too. I have been seeing more double vision then I am used too. Plus the bottom of my feet felt puffy yesterday so I had a poor me day.....lol
I am only wanting to have the muscle biopsy to see if this is why I am so weak and I guess just to confirm both dr. have said it looks like. So I guess I need that answer. And yes I will make sure it is frozen, I have read about that. Most people with CPEO have the droopy eyes I do not. Maybe I have something different who the heak knows!!! So for me the muscle biopsy will answer questions for me.(I hope) If anything it will tell me why my arms and lower legs are so weak.
Have you in the past had any problems with B12 defincy? (not sure if that is how it is spelt) I have and have also read that it can cause nurve damage.
I also had an over active thryoid about 24 yrs ago. all these things just make me wonder....
Anyway I am off to get a hair cut and then I have a meeting so you take care.talk soon!!
These is really such a difference with ppl. so many ppl on this board have the muscle weekness, i don't have that yet. You have the hearing issues. Some ppl are really tired, I haven't had that sympton yet. I... Anyway... I'm trying to blink a lot so my eyes don't hurt (that is what dr told me to do when i;m on computer) more later
Last edited by moderator2; 08-24-2011 at 08:02 PM.
hi dear, sorry been out b/c i had to reset my password and blah blah blah. I don't have that tired feeling that most have now, but have such severe eye pain at the end of the word day I can hardly see straight! my company may order an anti glare screen for me.
I'm so sorry you are so tired. I sleep really well and don't get too tired yet. How are you feeling?
Good to hear from you! I have seen the anti glare screens. Used to have them at a company I worded for, for sentive eyes in the office, the girls liked them once they got used to them.
I am feeling ok...tired like always but hey!! I have an mri on June 7th. Had no idea: the nuroligist ordered this one. Still waiting for the app. for the musscle bio.
I have been e mailing the hard of hearing in HAmilton, I am on the list to take speech reading and will probably go to this event they are having on june 11 to learn about the inplants, I cant get them yet as I still have 40% hearing and the operation is like 25k, with that they only do it on people that can't use hearing aids. Also see some devices, like smoke detectors etc.I cant hear the thing if it goes off and I dont have my hearing aids in!! K well must get in the shower and ready for work, have a great day!!
I, too, have CPEO or The Chronic, as I call it. It showed up in my left eyelid when I was 16. At 20 I had an eyelid lift. At 28 I was getting double vision and had a strabismus surgery at UCLA to correct that, where I was finally diagnosed with CPEO. At 29 I had the frontalis sling done at UCLA to help lessen the droopiness of my left eyelid. I am currently 33.
My dad has this disease, full blown. Both eyes, both eyelids, muscle weakness, and he couldn't swallow much of anything for most of my life. He got that ability back about ten or so years ago. He is currently 62 and his eyelids started drooping in his late teens, early 20s.
So far, I don't have any other symptoms. Neither my older sister or my younger brother have any issues whatsoever.
Some days my eye looks almost normal...to me. Other days it looks pretty bad. I have had plenty of people walk right up to me and ask me if I have been punched in the face or what is wrong with my eye. People can be so rude. I do my best with eyeliner to camouflage it but I find myself struggling with the fact that I will never look "normal". To top it all off, I'm an actor.
The surgeon at UCLA who did my frontalis sling said I would never look normal but that this would get me as close as I could be. I'm under the impression that since this is a progressive disease that I'll periodically have to go back in and have it adjusted. I'm just not sure when I should do that.
I haven't seen anyone for my eye since my last surgery which was 4 years ago now. I'm frustrated that there's nothing I can do to make my eye look better. I'll be walking along thinking I look normal and someone will make a passing comment about my eye and it brings me right back to the reality that I DON'T look normal. I try not to let it bother me but it's right there on my face. And I'm an ACTOR. That's what people look at - my face.
I've never known anyone besides my dad who had this so even though it sucks, it's nice to know I'm not alone. =)
hi my friend, I'm so sorry. You are not alone. I wish we could all get together and have a a support group gathering. None of my family, mom or dad's side, great grandparents and beyond have had this. Mine was apparently a rare occurrence. Along with droopy eye, (mainly right eye), also have chronic dry eye and now balance issue due to weakness of my feet. I went to Hopkins and basically the diagnosed me and said i have a while to wait to get frontalis sling. They said wait till your eye almost closes. Computer bothers me a lot, so i have to get off this thing.
not crying anymore... i am just angry, but just trying to cope and thankful i just got his now and not 20-30 years ago like so many.. I have a lot to be thankful for. what is going on with you!! i'm dreading winter b/c that is when eye pain is worse for dry eye.
Last edited by moderator2; 08-24-2011 at 07:59 PM.
This is my first time posting on this site.. I have SLE and post alot on their site.. We just found out that my husband has CPEO..through a muscle biopsy that he had done.. We are clueless as to what is going on.. He started having hearing loss a few years ago and his eyes have always been a little droopy, but we never thought anything about it..Well, long story short: he had a really bad car accident in May and spent about 3 days in the trauma unit and fractured all the bones in his face, when we seen the eye dr on the trauma team, the first thing he ask us was did he have CPEO? because he woke up from the wreck with double vision (that he still has) and he could not move his eyes from one side to the other..We have seen about 5 specilist by now and go back to his eye specialist tomorrow.. they are even talking about putting a pacemaker in!!! Can someone who has had this awhile PLEASE help me understand what we are in for and if we are going in the right direction?
Thanks to anyone who can help...
so sorry to hear about your husband. The thing with all of us with CPEO, we all have had very different symptoms at different times. I am 39 and was just diagnosed this year. It is very scary because it is a rare Mitochondrial Disease and there is no form of treatment or cure.
The Following User Says Thank You to BYU1972 For This Useful Post: bamagirl79 (08-25-2011)