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Board: Neuromuscular Diseases 07-08-2013, 04:32 PM
Replies: 55
Views: 22,439
Posted By BYU1972
Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Silv, how are you doing these days?
Board: Neuromuscular Diseases 07-08-2013, 04:27 PM
Replies: 55
Views: 22,439
Posted By BYU1972
Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Jayme, how is everything with your eyes and feet?
Board: Neuromuscular Diseases 04-13-2013, 02:51 PM
Replies: 0
Views: 603
Posted By BYU1972
Levator eye muscle surgery vs Sling

hi, just recently had lower eyelid lifts (cause my eyelids don't close together), and this has helped my dry eye issue. Dr. wanted to do this before any kind of upper eyelid lift... Now he said he...
Board: Neuromuscular Diseases 03-01-2013, 11:52 AM
Replies: 26
Views: 6,005
Posted By BYU1972
Cool Surgery coming up

having lower lids lifted March 11 and 13 2013... Upper lids haven't been done yet. Hoping this will help discomfort and blurry vision b/c my eyes do not close all the way. :cool:
Board: Neuromuscular Diseases 02-21-2013, 07:01 AM
Replies: 26
Views: 6,005
Posted By BYU1972
Re: Is anyone else diagnosed with CPEO?

Bullfinch... your story/symptoms so similar to mine. Here in Tampa, Florida, my neuro. told me he doesn't do muscle biopsys. one Neuo opthmo wouldnt' even see b/c i DON"T have much double vision. ...
Board: Neuromuscular Diseases 02-16-2013, 09:11 AM
Replies: 26
Views: 6,005
Posted By BYU1972
Cool 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...
Board: Neuromuscular Diseases 02-16-2013, 08:11 AM
Replies: 26
Views: 6,005
Posted By BYU1972
Re: Is anyone else diagnosed with CPEO?

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...
Board: Neuromuscular Diseases 02-10-2013, 02:00 PM
Replies: 1
Views: 644
Posted By BYU1972
Re: No concentration feeling out of body

do you have a diagnosis? Which neuromuscular disease do you have? I also have neuropathy and have a neuromusclar disease. Neuropathy is a pain, but since diagnosed in 2008 and again at the end of...
Board: Neuromuscular Diseases 02-10-2013, 06:00 AM
Replies: 55
Views: 22,439
Posted By BYU1972
Re: Chronic Progressive External Ophthalmoplegia (CPEO)

silv, feeling any better? I had my eyelids probed aug. 2012, helped a bit. Lower eyelids lifts scheduled next month. how have you been? i did move from MD to FL...
Board: Neuromuscular Diseases 02-10-2013, 05:35 AM
Replies: 26
Views: 6,005
Posted By BYU1972
Cool 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...
Board: Neuromuscular Diseases 02-09-2013, 04:28 AM
Replies: 26
Views: 6,005
Posted By BYU1972
Cool the last two years have been busy for me too!

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...
Board: Neuromuscular Diseases 11-06-2012, 05:16 PM
Replies: 55
Views: 22,439
Posted By BYU1972
Re: Chronic Progressive External Ophthalmoplegia (CPEO)

I also have a Blepharitis... inflammation of the eyelids. My eyes hurt so bad I want to go pluck them out
Board: Neuromuscular Diseases 11-06-2012, 03:38 PM
Replies: 55
Views: 22,439
Posted By BYU1972
Re: Chronic Progressive External Ophthalmoplegia (CPEO)

can't wait. My eyes are killing me. One gal is from Ontario and has hearing loss.
Board: Neuromuscular Diseases 05-04-2012, 11:55 AM
Replies: 22
Views: 7,508
Posted By BYU1972
Re: CPEO 2011

hi, well... now I am back in Florida with heat but waiting for humidity to kick in. I have done so many hot compmresses and put so much gel in my eyes...
I will tell you my main thing that makes...
Board: Neuromuscular Diseases 09-08-2011, 07:40 AM
Replies: 55
Views: 22,439
Posted By BYU1972
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...
Board: Neuromuscular Diseases 09-08-2011, 05:22 AM
Replies: 0
Views: 1,099
Posted By BYU1972
Light Sensitivity!

Hi, i have CPEO (MITO neauromuscular disease) and also have extreme light sensitivity. Anyone else with this? I can't function with such bright lights. When i am in the dark, or natural light,...
Board: Neuromuscular Diseases 09-07-2011, 08:01 AM
Replies: 55
Views: 22,439
Posted By BYU1972
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...
Board: Neuromuscular Diseases 09-07-2011, 07:19 AM
Replies: 55
Views: 22,439
Posted By BYU1972
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...
Board: Neuromuscular Diseases 09-07-2011, 07:06 AM
Replies: 55
Views: 22,439
Posted By BYU1972
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...
Board: Neuromuscular Diseases 09-05-2011, 03:35 PM
Replies: 55
Views: 22,439
Posted By BYU1972
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...
Board: Neuromuscular Diseases 09-04-2011, 03:38 PM
Replies: 55
Views: 22,439
Posted By BYU1972
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...
Board: Neuromuscular Diseases 09-04-2011, 12:29 PM
Replies: 55
Views: 22,439
Posted By BYU1972
Re: Chronic Progressive External Ophthalmoplegia (CPEO)

all this and your are 20 yrs old, wow. not planning on going to any more dr. till my eye is closed almost all the way. None really helped me except telling me there is nothing I can do.
Board: Neuromuscular Diseases 09-04-2011, 10:34 AM
Replies: 55
Views: 22,439
Posted By BYU1972
Re: Chronic Progressive External Ophthalmoplegia (CPEO)

no neck pain, I put on a therapatch if necessary but I think that is from stress from work.v
my biggest thing is sensitivity to light. I've never heard of any anyone with sensitivity to light who...
Board: Neuromuscular Diseases 09-03-2011, 05:48 AM
Replies: 55
Views: 22,439
Posted By BYU1972
Smile Re: Chronic Progressive External Ophthalmoplegia (CPEO)

oh dear lorddan. wow, you have had droopy eye for 20 years> just now getting surgery and you have had so many!!!!! i''m almost 40, eyes started drooping last year. Have horrible light sensitivity...
Board: Neuromuscular Diseases 08-25-2011, 12:03 PM
Replies: 55
Views: 22,439
Posted By BYU1972
Re: Chronic Progressive External Ophthalmoplegia (CPEO)

bama girl really needed to hear that about the droopy eyes, not being able to address that issue till they are almost closed. I have had the same situation, and had one neauroplastic dr. ready to do...
Board: Neuromuscular Diseases 08-25-2011, 11:41 AM
Replies: 55
Views: 22,439
Posted By BYU1972
Cool Re: Chronic Progressive External Ophthalmoplegia (CPEO)

bama girl, take heart, as i said there are different symp. out there. Most of us have the droopy eyes, some have had or have hearing loss, or heart conditions (usually associated with KSS). Most...
Board: Neuromuscular Diseases 08-25-2011, 03:42 AM
Replies: 55
Views: 22,439
Posted By BYU1972
Re: Chronic Progressive External Ophthalmoplegia (CPEO)

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...
Board: Neuromuscular Diseases 08-17-2011, 10:50 AM
Replies: 1
Views: 1,261
Posted By BYU1972
Re: Frontal sling surgery

so glad you are happy, seems you have had cpeo for many yrs correct?
Board: Neuromuscular Diseases 08-17-2011, 06:32 AM
Replies: 55
Views: 22,439
Posted By BYU1972
Re: Chronic Progressive External Ophthalmoplegia (CPEO)

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!! ...
Board: Neuromuscular Diseases 08-01-2011, 08:04 AM
Replies: 20
Views: 12,031
Posted By BYU1972
Re: CPEO information

so coQ10 helps? Really, for possible CPEO symptoms? Nails healthier? I'm into that as mine grow but are super thin and don't grow evenly. ARe you also on fish oil (that is the only supplement i...
Board: Neuromuscular Diseases 08-01-2011, 07:40 AM
Replies: 20
Views: 12,031
Posted By BYU1972
Re: CPEO information

hi cpeo sufferer here. have droopy eye, weakness in feet mainly and horrible sensitive to light and dry eyes. did you have Frontalis Sling? or something else. thank you.
Board: Neuromuscular Diseases 08-01-2011, 07:31 AM
Replies: 1
Views: 2,164
Posted By BYU1972
Re: Symptoms of CPEO

Re CPEO anyone out there have weakness in their feet (feels kinda on wires).
Board: Neuromuscular Diseases 08-01-2011, 07:17 AM
Replies: 1
Views: 1,383
Posted By BYU1972
Re: My frontal sling surgery

hi wag, byu here, after being diagnosed am trying everything possible to not have this surgery, wear sunglasses all the time, don't use computer at home, use the steam room at the gym, even planning...
Board: Neuromuscular Diseases 07-18-2011, 06:35 AM
Replies: 1
Views: 2,164
Posted By BYU1972
Symptoms of CPEO

Hi, byu here, plan to move South by the end of the year where it is warmer longer and their is higher humidity. My work found a screen cover for one of my screens, pharm. told me that dry eye is...
Board: Neuromuscular Diseases 07-17-2011, 02:16 PM
Replies: 55
Views: 22,439
Posted By BYU1972
Re: Chronic Progressive External Ophthalmoplegia (CPEO)

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...
Board: Neuromuscular Diseases 06-18-2011, 12:41 PM
Replies: 0
Views: 1,085
Posted By BYU1972
Cool JUNE CPEO re: Restasis, fish oil, Navigator sunglasses and hot showers

i've realized taking hot showers has helped my eyes not droop so much and open them up more, also mom got some cheap Navigator sunglasses from the TV and along with anti glare screen, I've been doing...
Board: Neuromuscular Diseases 06-18-2011, 12:32 PM
Replies: 3
Views: 995
Posted By BYU1972
Re: cpeo/test

oh, ok, i had ekg to test my heart (that was several months) maybe that is the test they use for the heart in Canada. oh... new info. I've found very hot showers (waste of water etc and not too...
Board: Neuromuscular Diseases 06-18-2011, 06:09 AM
Replies: 3
Views: 995
Posted By BYU1972
Re: cpeo/test

never heard of that test. just out of curiosity why do you still go to dr. I've been diagnosed w cpeo, that is it. are you still feeling bad except for hearing loss? byu
Board: Neuromuscular Diseases 06-08-2011, 07:16 AM
Replies: 22
Views: 7,508
Posted By BYU1972
Re: CPEO 2011

wow you are 24... bless your heart!!! i've heard that it slips and the sling moves if you bump your head or something and hurts. You probably have to get it fixed etc... every few years etc. You...
Board: Neuromuscular Diseases 06-02-2011, 09:40 AM
Replies: 22
Views: 7,508
Posted By BYU1972
Re: CPEO 2011

hey Ren-so how young are you again? so you do have dry eyes AND the droopy eye situation due to CPEO. so are you in the states cause i don't recognize the names of drops you use. my lifesaver (it...
Board: Neuromuscular Diseases 06-01-2011, 08:29 AM
Replies: 55
Views: 22,439
Posted By BYU1972
Re: (cpeo)

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...
Board: Alternative Medicine 05-27-2011, 12:03 PM
Replies: 12
Views: 3,556
Posted By BYU1972
Re: dry eyes and fish oil

hi fellow dry eye suffers, this board really helps me so much. First, i have had light sensitivity for about 18 months or so (where i really noticied to bright sunshine bothering me) then gradually...
Board: Neuromuscular Diseases 05-26-2011, 09:28 AM
Replies: 55
Views: 22,439
Posted By BYU1972
Re: Chronic Progressive External Ophthalmoplegia (CPEO)

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...
Board: Neuromuscular Diseases 05-26-2011, 06:41 AM
Replies: 55
Views: 22,439
Posted By BYU1972
Re: Chronic Progressive External Ophthalmoplegia (CPEO)

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...
Board: Adrenal Disorders 05-25-2011, 06:51 AM
Replies: 11
Views: 4,434
Posted By BYU1972
Re: Please help! Do you recognize these symptoms?

Where does she live in the US? (not exact of course) just general area
Board: Sjögren's Syndrome 05-24-2011, 02:08 PM
Replies: 16
Views: 7,798
Posted By BYU1972
Re: Dry Eyes- Sjogren's Sydrome

I feel your pain I have CPEO with possible Sjogrens so eyes are droopy but I also have super chronic dry eye and have been on restatsis for OVER six months, Theratears oil, omega three caplets - 6...
Board: Depression 05-24-2011, 01:44 PM
Replies: 2
Views: 480
Posted By BYU1972
Re: Just want to talk...haven't been feeling good lately :-/

hi Healthboards buddy, been posting here since health diagnosis and i'm bummed out.
My eye is burning so bad now. You must be in college now, boy college was great. That was almost 20 y ears ago...
Board: Sjögren's Syndrome 05-24-2011, 12:11 PM
Replies: 0
Views: 1,025
Posted By BYU1972
CPEO and Sjogren's?

Have severe dry eye and sentitivity to light along with new diagnosis of CPEO (droopy eyes, muscle weekness), How is everyone managing computer time while having dry eye? Are you still working. I'm...
Board: Neuromuscular Diseases 05-24-2011, 08:32 AM
Replies: 55
Views: 22,439
Posted By BYU1972
Re: Chronic Progressive External Ophthalmoplegia (CPEO)

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......
Board: Neuromuscular Diseases 05-24-2011, 01:37 AM
Replies: 55
Views: 22,439
Posted By BYU1972
Re: Chronic Progressive External Ophthalmoplegia (CPEO)

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...
Showing results 1 to 50 of 73

 








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