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Old 02-25-2009, 04:29 PM   #1
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Charlene,
In regards to your reply to Sara. I would like to know more about your surgery. My doctor wants to to this levator sling, since my lids have fallen since lat April when I had sdurgery tolift lids. How sever is it. How does it look cosmetically.
Waghapppy

Last edited by waghappy; 02-25-2009 at 04:35 PM. Reason: too long originally

 
Old 02-28-2009, 07:23 PM   #2
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Hi Waghappy:

I had two seperate surgeries for the lift. I wanted to make sure my eye took well to the procedure before having the second one done. My surgery was back in 1987 and used silicone strings for the procedure. This was very new alternative at the time. Prior to this eyelids were lifted by tying off the muscle. I had been into Columbia Eye Institute for diagnosis of my CPEO and then went to my local Opthamologist Dr. Perry Garber in Manhasset. Before proceeding with the surgery I sought 2nd and 3rd opinions from other opthamologists. When I was satisfied that this was the procedure for me I scheduled the surgery.
I should say that my doctor was exceptional. It is very important that you doctor assess your tearing reflex and ability. If you tend to have low tear production this surgery is probably not for you. My doctor looked closely at the strenth of the muscle in each eye and explained what concerns he had in particular with my left eye. It was the weaker of both eyes and as a result he didn't raise this as high as my right eye. I had asked if I could wear contacts at one point and was told basically not to complicate my situation for many reasons. I had my surgery back in 1987 and at that point they expected the procedure to last only 10 years. It's 22 years later and it's still going strong (knock on wood) I had double vision prior to the surgery however my eyelid completely blocked my vision in one eye so I didn't notice it. I did have some doubt about dealing with the double vision after the surgery but it was worth it. For the most part my brain ignores the second image and if I need to I still see out of that eye by closing my strong eye. Sounds strange but it works for me.
Hope I didn't bore you by writing too much. If you have any questions please don't hesitate to ask.
Charlene

 
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Old 03-01-2009, 10:35 AM   #3
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Charlene,
Thanks for your reply. The more info I get the better, you did not bore me. At one one point my doctor said she wanted to avoid this if necessary. She shaid it does not look cosmetically as good as the surgery I had to pull muscle. When I had that done I thought my eyes would be open more. I guess the choose no to over correct. When I went two weeks ago she said my eyes were much better in August and since had fallen and I shoud just get the other procedure done she said so I start seeing better again. She said over time strain to neck from looking way up with kill my neck and back! When you had this done how did it look? Is the recovery the same as first procedure. I had a short visit with my doctor this time had tests for insurance pruposes; I really need to speak with er further about this before I choose a date. I am going to the Naegel Eye Center in West Orange NJ. I do have a lot of trust in her. Shoud I go for a second opinion?
I have read other posts and seem to be reading a lot about muscle biopsies theyare getting. I do not have any muscle neurological problems. I had been to neurologist and had MRI and was tested for myasthania gravis all negative. Do you think CPEO can just be eye related?
Charlene do you have any muscle problems through body?
Last January I was sent for tests, as I was having some involontary movements. Probably from stress taking ove my business myself. All those things have passed and no more episodes, and all tests negative.
Charlene sorry for rambling I just need to talk to someone with this. Does this procedure look lumpy at all?
Waghappy

 
Old 03-03-2009, 09:46 AM   #4
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Hi Waghappy:

I would always recommend getting a second opinion from another doctor especially regarding surgery. It's not always easy to find doctors who are familiar with our types of problems though. I know for myself I needed to work through my own apprehensions and get confirmation I was doing the right thing. I was most impressed at my doctors reaction when I told him I was seeking other opinions. I think that was a large factor in my faith in him. He was fine with me doing what I needed to do.

When I was diagnosed there was virtually no resources or information on Mito disorders. I was flying "blind". I was told it would only effect my eye and that there is a cardiac connection. CPEO patients can develop cardiac arithmias. Although rare it happens and maybe later I'd need a pacemaker. My eyes were status quo for many years. I noticed in my early 30's I felt really weak. In working out my ability to lift weights and my stamina was getting worse and worse. I chalked this up to maybe I'm just being lazy..out of shape..exhausted from some stressful life situations etc... I never made the connection to my CPEO because I never knew about this possibility. I finally got so frustrated that I couldn't bench press 10 lbs and decided to go get a full physical including a full cardio stress test. I went online to print out information on CPEO to give to my cardiologist and in doing so found out that my muscle weakness was in fact most likely related to the CPEO. I'm normal looking however I have a lot of muscle weakness. I went skiing 5 years ago for the last time. I could not escape the feeling that if I fell I wouldn't be able to get up. I'd have to wear one of those called alerts "Help, I've fallen and can't get up". Excercize intolerence can happen with CPEO. I have not had a muscle biopsy done although I would like to. All my doctors at Columbia eye institute and the opthamologists I've seen have all said I have all the markers and symptoms. Muscle biopsy when done correctly can show some markers and confirm mito problems.
CPEO is not always inherated. You could be a first generation aboration. You might want to look up Dr. Bruce Cohen who is a specialist in pediatric mitochondrial problems.
UMDF.org has a lot of info on mito disease and Dr. Cohen is included in an educational DVD they put out. Very informative. In his opinion there are only 3 locations in the USA that prep and freeze the muscle biopsy's correctly.. If the biopsy's arenet prepared correctly some important genetic markers are lost and the reading of the muscle isn't as accurate. Anyway, UMDF is a good resource. They are having their yearly conference in Washington May or June which I plan on attending. It's a chance to meet other families and patients. There are also medical updates and question and answer times with doctors etc...

Hope you find this helpful. Look forward to hearing from you.

Charlene

 
Old 03-10-2009, 03:33 PM   #5
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Charlene,
Thanks for reply.I do have very slight muscle weakness, a little walking up stairs, which is why two doctors thought I had Myasthia Gravis. So far I am not to affected, only in eyes. I did feel something off for a while now. When I went to my health pract. for my usual thyroid test as I have hypothroidisim an associate of hers noticed me look way way up to see!! I guess I just thought it was age in my eyes. She sent me to a plastic surgeon who would not even touch me. He said I needed to to go someone who does ptosis. So I went to Dr Naegel who was in my plan, and by the way who had been the only one to diagnose my hypothroidisim in 1991 as I was only 41 and my eyes were all bags and swollen and was going to have plastic surgery. She took one look at me and said you need an endrocronologist. So here I am back to her and she told me I had CPEO. I do have a lot of trust in her. he also was telling me that this was common in French Canadians, as she studied in anada for a while. Well my Late father's family are are all French Canadians that came down into Maine.
I am in no rush for the surgery right now, maybe in summer, that is if Insuranse agrees my condition warrants this.
I have a very physical job-dog groomer-my own business, and I noticed a little weakness when stress is involved. Last year was very stressful taking over business myself and I had some involuntary movements in eyes and hand, but tensilon test and other muscle tests at neurologists were negative. I have not had anymore episodes.
I do not think I am going to get muscle biopsy. I am 60 and just hope

I stay at this level at leat until I retire at 90!!!!!!
You had both surgeries? I had one last April to pull muscle up-lasted for a very short while-not great now. The last you had with sling attached to brow, how was that different than first. Was the recovery time about the same as first. I had no pain with first surgery. What should I expect with sling attached to brow?
Charlene, sorry to be rambling like this, I am just frustrated, no one knows what causes this.
Let me know more about your srugery in 1987
Thanks,
Waghappy-Margot

 
Old 03-13-2009, 07:47 PM   #6
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Hi Margot:

I did have two eye surgeries. I did not feel comfortable having both eyes operated on at the same time and since the frontalis surgery with silicone was new at the time I decided caution was best and had each eye done at different times. Recovery wasn't bad at all. I had an eye patch for maybe 2-3 days and had that taken off at the doctors office. My eye was a bit black and blue with the skin around my lashes looking a little red... Really just looked like a black eye on the mend. I also had 3 little incisions just above my brow following my natural wrinkle. Not noticeable once healed. each incision measured maybe 1/4 inch? maybe a little larger..
I do react to stress but try having a stress free life! It's just not possible. Sounds like you've got a good neurologist which is wonderful. My neurologist was key to my finding the right path to takefor treatment. I'd still like get a muscle biopsy but don't have any great insurance at the moment. I don't think it would cover it anyway... From what I understand the muscle biopsy and testing will help me kind of know how all my mitochondrial stuff might play out in the coming years. Don't know if I really want to know though. I'm still single and the thought of dealing with further problems alone can be overwhelming. Most frustrating about all this stuff is that aside from my eyes I look normal. So I feel weak or tired and I think others think of me as just lazy. I don't like to talk about the mito stuff because frankly no one is really aware of it and it's just hard to explain. I don't want to be treated like I've got medical limitations but I do and people forget. LOL
You sound like you're doing well especially if you're only just starting to feel some muscle weakness. Managing your own business is wonderful! I work with a sister of mine in own business. It's been great but I know I have to start socking savings away for my "future" OY. Keep up the good work and try to stay stress free! By the way, you're not rambling. It's nice to hear from others about how they feel. It's pretty easy to feel you're all alone in this. It's a strange comfort to share with others on this blog. I don't know you but it's comforting to know I'm not alone! Yet I am cause I don't know you.... LOL It's a viscious circle.
Have a great weekend and I'll look forward to hearing from you!

Charlene

 
Old 03-23-2009, 03:46 PM   #7
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Hi Charlene,
Did you ever have the surgery I had where they just pull the muscle, and then go to other surgery? My doctor tried the other first and said if it wasn't working would do the sling attached to brow. I have not heard from her awaiting, awaiting insurance. Now this week I feel sooo great I even think I can lift eyes on my own!!! Does the muscle feeling come and go with you? Some days walking up stairs my muscles ache, then other time I will feel so good its like a high!!! It is so hard to explain. Dr. Nagel said this could just affect my eyes. I try not to get too stressed out-hello hard to do!! That is when I have these strange feelings in my body. My job as a dog groomer is severly physical. As I told you last year when I took over business myself( my bus partner retired) the stress almost sent me over the edge. I also think this CPEO was coming to a small surface.
Is it frustrarting for you to want to feel grreat all the time!
I am wanting to put this other surgery off for awhile as my eyes aren't too bad now. When I feel a little weak they go down a lilttle. I am still looking slightly up to see, but now as bad as before.
With the surgery you had, does the levator muscle in eye functiion at all or is your eyebrow doing all the work to open eye, and how does that work? My doctor just said with this other surgery when I want to open eyes I use eyebrow. Now this week I really feel I could open my eyes without looking up. I can't explain it but I know you know what I mean.
It is all such a pain in the ***!! I also am single and will work as much as I can while I can and try to save for "old Age"!! Is your thyroid alright? I am on medicine everyday as I have hypo-hardly any function. I was diagnosed with that in 1991 at 41. Do you think CPEO is at all autoimmune.
I don't want a muscle biopsy as it will not change anything and the stress of finding the right doctor and going through it I don't need.
Have a good week and hang in there,
Margot

 
Old 03-26-2009, 08:16 PM   #8
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Hi Margot:
Actually everything with my eyes adds a lot of stress. Right now I'm without medical insurance so I'm not really doing anything. I'll have insurance in line in the next month or two but even just not having insurance adds a lot of stress to me. Problem is when I was diagnosed they did tell me it would only affect my eyes. There also wasn't a lot of information out there AT ALL. Over the years I've had frustrations come up such as my muscle weakness... just tiring easily and occasional problems swallowing. Thinking I'm not excercising right... thinking I'm lazy..that I'm just over-reacting I would just let it slide etc.. getting down on myself about it. When everything really escalated and I thought I better get to a cardiologist for a physical I really came to a rude awakening. I went on line to bring information about CPEO to my cardiologist since soooo many docs haven't even heard of it and found out that all the symptoms I had probably was related to the CPEO. I'm sooooo concerned for my future and pray that God will give me what I need to deal with it all. I try not to think of it too much because it does more to zap my energy than anything else right now.

I never had the muscle surgery primarily because it was a permanent solution. No reversing it if it effected my eyes negatively. Whereas the frontalis sling with the silicone was totally reversible. I don't think I have much muscle to lift my lids.. I can't get that wide eyed look without raising my brow...but mind you my "wide eyed" look isn't really wide eyed. Letely I feel like my eyes are going through some vision changes and it's definately scary.

Im sorry you've got the stress from carrying the business yourself. That is very stressful. I'm partners with my sister in our own business. Sometimes I wish I could have a job where I could count on a weekly check without worry but then I wouldn't have the flexibility that I like so much. Hopefully your profession will be recession proof! I'm torn about getting a muscle biopsy.. when the testing is done from what I understant they look to see what genetic markers will be found to help diagnose to what extent the Mito problems are. I also know from reading and going to some lectures that the testing results, even if they find something, is by no means certain that we'll exhibit symptoms etc.. I'm afraid if someone tells me I might feel a certain way that I might just give into it. I don't know. Everyone has a cross to carry.. I don't know if ours is any worse than other peoples... I just get tired of no one really understanding how I feel. You know what I mean? I'm debating going to the UMDF conference in Washington DC. It's a major expense and I want to meet others with similar problems but hesitant to also find out or focus on my medical problems too much. It's exhausting.. you know? lol OY OY OY.

Well I signed on here not realizing it was so late and that I was so tired. I'm gonna head off to bed. Thanks for sharing....I totally get where you are coming from and I'll keep both of us in prayer. Have a great week.
--Charlene

 
Old 04-05-2009, 12:39 PM   #9
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Hi,

Some weeks ago our little daughter was examined for possible neurological problems, because of her developmental slowness and other problems(sheís a 5year old, has huge speaking problems, low energy, hanging eyelids, etc).

She has had the works: EEG, MRI, EMG, ECG, blood tests, etc. Unfortunately they found some worrisome things: her lactate level was slightly too high, and she has a certain small damage in her brain. Also a bit too much fluid in the brain.

The neurologists suggests that (although we have no definite proof yet what rotten deletion or mutation is bothering our family and causing cpeo+ in me), that she should be treated as a k.s.s. patient. So lots of rest, and a heart check every 3 months, and a neurological check every half year.

On top of this, they also found out she is really quite deaf. Probably due to fluid in her ears. So she will have little tubes placed in her ears next month. But first Iím going in for revalidation next week. I will be in the center for three weeks.

Zofia

 
Old 04-06-2009, 07:18 AM   #10
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Charlene,
Hi, I did not realize my swallowing problems were part of CEPO until you mentioned it last. Like you some days I feel really good then I have days where I am just a little tired. When I feel great I try to do more-living my myself with yard work and taking care of my shop-I do what I can. I think gettting overwhelmed and stressed about what you can't do is worse.
As far as insurance goes mine just went up $78.00. I called BCBS and the guy said hang on to what you have. If I staart with a new plan it would be more than what I am paying now which is $601.00 per month. I have a small second job- taking care of some clients when they go away to help with health cost.
Charlene I can relate when you say you are scared of the future being alone; but I think a relationship requires more energy than I have!!! If I had been married for many years it would be different. I was married once,divorced then lived with someone for 8 yrs. Have been on my own since 1986.
I really think my father had CPEO but was not diagnosed. He also had a swallowing problem. He had eye surgery, but I just thought it was due to age. He is not alive so I can't ask him exactly when the surgery was and I don't remember dates and I was not living at home,. Even after surgery he look up to see. I do not even know who did the surgery and can't find records. My mother had eye surgery which was due to age. A lot of older people have this. I just have this feelinhg about Dad, as he was french canadian and my eye surgeon said this was common there which I am repeating myself to you.
I have not heard fro Dr. Naegel yet about my surgery. The insurance could have turned it down. I only had the other surgery one year this April. I may have to wait.
Do you ever feel some days your eyes are better than other days? I guess the rest of me feels better those days. I like to have wine at night after my hard day, but try to limit in the event it would affect this condition.
Are you tired at the end of day at all?
Also were you tested for Myasthania Gravis? Two doctors were sure I had it The Tensiloln test was negative. My neurogolist did not haave a clue after that test. My eye surgeon diagnosed me. She knows her stuff!
I will go for a second opinion before this next surgery if the insurance gives go ahead. One of my clients is a plastic surgeon He does a lot reconstructive stuff. I also watch hhis dog who he is nuts over so he wold give me a good price if he was not in my insurance plan.
When you talk about wide eye look-never will happen with me!! With the sling attached to brow muscle do your eyes open wider. When you are first diagnosed you find yourself looking at every woman's eye muscle and how they can open their eyes and thinking why can't I do that. I know that is pretty pathetic!!! Did you do that?
Anyway have to call my shop for andy calls. I am closed on Monday but check messages.
Have a great week
Your CPEO pal
Margot

 
Old 04-06-2009, 07:32 AM   #11
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Zofia,
I am so sorry to hear about daughter diagnosed so young.
Have you been diagnosedd with CPEO long and have you had eye surgery, and if so what eye surgery did you have had.
I guess this runs in families. My parents are not living, but I think my father had this as he had swallowing problems and had eye surgery. My eye surgeon whio diagnosed me said this was common in French Canadians and my father's family were french canadians and moved to Maine.
I had been to neurologist and they said nothing about CPEO. Had test for Myasthina Gravis and other muscle things and MRI. It was the eye surgeon who made the CPEO diagnosis.
Will your daughter eventually have to have the eye surgery?
One of the doctors called my eye thing Ptosis, now it's CPEO. It is all confusing.
Let me know how you and your daughter are doing.
Margot

 
Old 04-07-2009, 01:14 AM   #12
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Hello Margot,

Iím at this very moment reading the medical report from hospital that just arrived in the post. Although I was already told in hospital, Iím still shocked to read they diagnosed our little girl with an encephalopathy. It is such a cruel word..

Ro.ma has only a slight ptosis. She tilts her head back when she is tired, but normally you hardly notice. Although she has these problems, she is a very happy child. She doen't have a lot of discomfort yet and doesn't seem to realise that she is a bit different from other children. Her palls are all some years younger.

I had the diagnose in 2006. I have an almost complete ptosis and some difficulty moving my eyes. I didnít have any surgery jet, because I have also very dry eyes and atrophy of the optic nerves. Iím very afraid to loose the bit of eyesight that I have left because of infections. Iím past the stage of vanity so I donít mind the strange looks. I have eye crutches on my spectacles. This helps fantastically!

Were you ever examined for OPMD? This is a non-mitochondrial muscular dystrophy which causes a.o. the syndrome CPEO and swallowing problems. This is a genetic disease which is seen mostly in French-Canadian families.

Zofia

 
Old 04-08-2009, 02:30 PM   #13
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Hi Zofia
I was tested at a neurogolist office for Myasthania Gravis and Muscular Dostrophy, which one I don't know! I had an MRI. Two doctors thought I had Myasthania Gravis because of my eye problem. When I had the tenslon test and it was negative the neurogolist said to go ahaeas with surgery my doctor wanted to do but wanted tensilon test first. I had the levator muscle pulled up. I have no vision problems other than normal weaar glasses for distance and at 60 reading!
Some days my eyes seem worse than others. My eye surgeon wants to do the levator sling-just waiting on insurance ok. Hve not heard-maybe insurance wants to wait the full year. The crutches on glasses sounds great. My father had them when he had macular degeneration. He also had his eyes fixed many years ago. He was french canadian, so whenDr Nagel of the Nagel eye center told me about this being common ther I just could not believe it. She had studied in Canada for a year. So now I know my Dad had this. He died about 7 yrs ago at the aage of 97! He had the swallowing problem and still looked up to see years after surgery.
I am sorry to hear about daughter's diagnosis. I don't quite know what that is. What can they do for it?Being she is so young are they going to repair the ptosis.
You and I have CPEO, do they still call the eye thing ptosis in CPEO. My eyes are a lot better since my surgery. When I went to doctor in August she said they had fallen, but that could have a bad day. The first surgery she said did not correct it enough. I want to put the sling thing off for awhile.
Let me know if your daughter has to have the surgery. She is so young it might help her ptosis. Don't you find this all so confusing and frustrating?
Margot

 
Old 04-12-2009, 10:07 AM   #14
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Hello Margot,

I find it very confusing and rather shocking to realize how incomplete and illogical the medical vocabulary is.

Ptosis is just the eyelids that drop, and with cpeo all the external eye muscles, also those that make it possible to look in different directions, work less and less. I have mostly ptosis, and some difficulty moving my eyes. As far as I know my daughter also only has a ptosis and only when she is tired.

Then there is the confusing situation that the combination cpeo is used for an eye problem that is part of a certain syndrome or the only manifestation of a problem, many of these mitochondrial, but some not.

Actually I am for years trying to find out why I (and probably my daughter) have cpeo. We know it is probably mitochondrial, because of high lactate and other symptoms, but up to now they didnít find the deletion or mutation.

Zofia

 
Old 04-13-2009, 08:04 AM   #15
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Hi Zofia,
I also find it very confusing. One doctor I went to called it ptosis. He did not do this type or repair only cosmetic he said. Dr Nagel called it ptosis also.which she said need repaired as I was looking so far up to see. It was affection my vision. Then when I asked her what do I have.he said I had CPEO, which I had to write down, had never heard of this!! Now if I hold my lids up with my fingers I can move my eyes in all directions. When I am very tired my eyelids are worse. I do at time have slight muscle weakness then it goes away, and I am still walking a few times a week and have a very physical job and I am 60!! Mayb e I just have ptosis but what causes that. Doctors don't give you a heck of a lot of info!
How old is you daughter and how is she doing? I looked up mitochrondial syndrom and no way do I have any of that. Oh and Zofia an ophthamolgist neurologist said I for sure had myasthania gravis-he was wrong.
So you were diagnosed with CPEO though. Maybe mydoctor is wrong and just have ptosis. I can't stand being this confused about it all.
So far I am not scheduled to have sling surgery. My doctor wants to do it but awaiting insurance approval. I am in no rush, as my eyes are better from surgery one year ago. Last year I was at time holding them open in stores to see, and lack of vision when in a large area was bring on slight confusion. Where did you get the crutch for eyeglasses? As you said forget vanity!!!
Talk to you soon
Margot

 
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