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Old 06-23-2008, 11:00 PM   #1
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SarahS1976 HB User
Chronic Progressive External Ophthalmoplegia (CPEO) PART 2

Hi all

I hope everyone from the first thread finds this one OK. I thought I'd make the thread as I wanted to answer brizzie's post.

Yes my treatment is on the NHS and theyre most interested.
I had my eyes lifted before they realised I had CPEO and it was on the NHS. Then I got referred to a Doc in Sheffield who did a muscle biopsy and confirmed. The biopsy is sent to Newcastle to be tested. Now the Professor up there wants to see me in Newcastle. I dont know why but I'll go and see what he has to say. Its quite a way away but nevermind. Just hope price of petrol has gone down by the time we have to go lmao!!

The alcohol problem I have..... It doesnt knock me out as such. Yes it makes me tired, but what I was trying to get across is my arms and legs ache real bad when I've had alcohol.

Anyway genetics counsellors are coming to see me on Tuesday 1st July. I'll let you know how that one goes.

Take Care
Sarah

 
Old 06-24-2008, 01:42 PM   #2
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brizzie HB User
Re: Chronic Progressive External Ophthalmoplegia (CPEO) PART 2

Never really noticed aching in the limbs specifically when I drink alcohol but I will keep an eye out - thing is that I drink very little alcohol these days. I had to go down to London for my biopsy, somewhere near Euston. I was passed around so many neuro specialists and had so many tests - Manchester, London, Southend even. They didn't have a clue, even after the diagnosis, but if the Newcastle professor turns up something useful please share! I couldn't find any surgeon willing to do the eyelid surgery before the diagnosis, even though I was going private at the time (the only way the GP would refer me at all), and since I spent several years getting negative results it was pretty frustrating.

I can maybe see the other GP at my local surgery and possibly get a referral, but she is pretty good so it isn't so easy to get to see her. My own GP is only interested if you say the word "private" and/or it costs him nothing. You've got genetic counsellors too? I had zero aftercare once diagnosed. Best care was from a local independent optician who at least got me on the right drops for the dry eye and checked for any damage, but I went to Boots for my last eyetest out of convenience and they were utterly useless.

Last edited by brizzie; 06-24-2008 at 01:46 PM.

 
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Old 07-08-2008, 01:52 PM   #3
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chchips1 HB User
Re: Chronic Progressive External Ophthalmoplegia (CPEO) PART 2

Hi Everyone:

I know this site gets people with CPEO from all over however I was wondering, of those of you in the USA, did anyone make it to the United Mitochondrial Disease Foundation's symposium? I was wondering how this was because I wasn't able to attend it.

For those of you not familiar with the UMDF I would encourage you to visit their website. I was directed to them from the Muscular Dystrophy Foundation. Although CPEO is a form of muscular dystrophy it really is more of a mitochondrial disease. I've also learned that although most of us share some of the same symptoms of CPEO because it's mitochondrial in nature a great many of us also suffer from very dissimilar symptoms. That's why its also difficult to diagnose.

Sarah- very interesting about CPEO only being passed on from the mother. It stops with the men? I never heard that. I had recently heard that the disease was tracked to a possible origin to a family who were French Canadian. I thought that was very interesting since my mother background is that she was part french canadian. I'd be very interested in what you find out from the genetics councelor.

Charlene

 
Old 07-10-2008, 11:57 AM   #4
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Re: Chronic Progressive External Ophthalmoplegia (CPEO) PART 2

Hello,

Iíve had a real shock today. I had a routine cardiologic check 3 days a go.

After a day and night my husband turned in the holter (I donít know if this is correct English) and then the cardiologist called us, that we had to come in again.

During the night I seem to have had a sort of rhythm problem, which may turn out to become a total heart block.

She really wants me to have a pacemaker, but the insurance only covers this if one has all the criteria of morgan adams syndrome.

Does anyone know if the form of heartblock which is related to cpeo is caused by this syndrome?

Zofia

 
Old 07-13-2008, 11:00 AM   #5
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brizzie HB User
Re: Chronic Progressive External Ophthalmoplegia (CPEO) PART 2

Quote:
CPEO only being passed on from the mother. It stops with the men
Charlene, this is true. - it is a fault in the mitochondrial DNA. My specialist explained it to me as being something to do with the egg, hence since men don't lay eggs... unless maybe, French Canadian men???

Quote:
Does anyone know if the form of heartblock which is related to cpeo is caused by this syndrome
Zofia, I have never heard of any heart problems associated with CPEO, although two of us here had heart murmours once, likely unrelated. KSS, a related disease, does have cardiac implications, so may other mitochondrial diseases. Are you 100% certain that it is CPEO that you have - can you get a second opinion?

Last edited by moderator2; 07-13-2008 at 11:58 AM. Reason: posted disallowed website(s)

 
Old 07-15-2008, 07:25 AM   #6
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zofia HB User
Re: Chronic Progressive External Ophthalmoplegia (CPEO) PART 2

Hello Brizzie,

No i'm not sure about the exact form of cpeo. My prof is convinced that I have an autosomal dominant form. They are still investigating. I've heard yesterday that the heartproblem is called: tachycardia ventricular.

The cardiologist also discouvered that I seem to have a very poor potasium and magnesium level in my blood. I find it all so worrysome. The idea of nearly dying during my sleep makes me stay awake at night.

Also it seems that nobody really cares anymore. I have so many health problems that friends and family seem to start thinking: 'Ow boy, she's got another thing again.' And my husband seemed to have flipped from this thing. he's worrying, but not able to talk at all.

Zofia

 
Old 07-15-2008, 12:18 PM   #7
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SarahS1976 HB User
Re: Chronic Progressive External Ophthalmoplegia (CPEO) PART 2

Hi Brizzie

I had a blood test in February to determine whether or not the CPEO is hereditry. Unfortunately mine is (I assume its different for everyone) and my children might have it. The genetics counsellor said they wont normally test the children unless theres something wrong with them. only my youngest has a symptom that is linked (and can be linked to all sorts of other things) so they MIGHT test him. My sister said, well youre going to Newcastle to help them, ask Professor Turnbull to test them up there. So thats what I'm going to do. I'm awaiting an appointment for both Prof Turnbull and a genetics consultant. I see the neurologist again (Mr Gibson in Sheffield) in December. Maybe try and get a referral to Mr Gibson in Sheffield. I found him very good.

Sarah

Last edited by SarahS1976; 07-15-2008 at 12:19 PM.

 
Old 07-16-2008, 02:22 PM   #8
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chchips1 HB User
Re: Chronic Progressive External Ophthalmoplegia (CPEO) PART 2

Hi Zofia:
One of possible side effects of CPEO IS DEFINATELY developing cardiac arythmia's. In fact that's the one consistent side effect I've always been told about. I don't think there are any statistics on it but not everyone develops this. Since I also have a family history of cardiac problems , my cardiologist has me wear a halter monitor every 2-3 years. You can get an EKG which will show the more extreme and developed problems but the halter monitor will hopefully catch smaller problems earlier. On the positive side, getting a pacemaker is one of the least invasive cardiac surgeries you can have. Pretty quick procedure sometime only taking 1-2 hours from start to finish. I've known many people who've needed one.

Nutritional imbalances can also worsen the symptoms of the arythmia and are fairly easy to fix. I hope your doctor has put you on potassium supplements to help correct the problem?

I can understand why you'd be upset about anything new. I get tired of it myself. I hope you find some peace in knowing that compared to other cardiac problems you could have, this is the more treatable.

Sorry to hear about your friends tuning you out and not calling you etc... I'm sure your illness is getting to them as well and it's hard to see someone you care about getting sicker and you can't do anything to help make it better. People don't always deal with life the right way. They run. I'm not always good at this myself but it helps to just try and be positive about other things in life at least around your friends. It sounds so lame but try and be a friend to them as well and not focus on the illness. I believe that for years I've actually pushed myself to function better BECAUSE I didn't know what CPEO can do to you and I've just pushed through it. Ignorance is bliss! I hope they rise to the occasion and stand by you.
God Bless,
Charlene

 
Old 07-17-2008, 09:02 AM   #9
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chchips1 HB User
Re: Chronic Progressive External Ophthalmoplegia (CPEO) PART 2

Did the doctor say what morgan adam syndrome is? I tried searching for it for a while and it seems like it must be a really really rare condition. I couldn't find it anywhere. Just curious.

Charlene


Quote:
Originally Posted by zofia View Post
Hello,

Iíve had a real shock today. I had a routine cardiologic check 3 days a go.

After a day and night my husband turned in the holter (I donít know if this is correct English) and then the cardiologist called us, that we had to come in again.

During the night I seem to have had a sort of rhythm problem, which may turn out to become a total heart block.

She really wants me to have a pacemaker, but the insurance only covers this if one has all the criteria of morgan adams syndrome.

Does anyone know if the form of heartblock which is related to cpeo is caused by this syndrome?

Zofia

 
Old 07-17-2008, 02:29 PM   #10
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Re: Chronic Progressive External Ophthalmoplegia (CPEO) PART 2

Hi Charlene.

I got the name wrong: it's Morgan Adam Stokes syndrome. it is a sudden cardiac death due to a heartblock.

Zofia

 
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Old 07-20-2008, 11:44 AM   #11
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brizzie HB User
Re: Chronic Progressive External Ophthalmoplegia (CPEO) PART 2

Hi Zofia - sorry you feel no-one cares anymore. But, you know, this CPEO is pretty rare and there is not much anyone can do about it, and people can feel a helplessness. They don't know what to do or say, they feel awkward, so they do and say nothing. It isn't their fault, so please forgive them. I try not to talk about my CPEO to friends and family, unless someone asks me a direct question, though it is nice to talk to people here, who are going through the same condition and understand.

I didn't know about the cardiac connection so I've learned something new. Maybe I should start taking more care of my heart!

Sarah, thanks for mentioning Prof Turnbull; I looked him up and he does seem to be one of the top researchers into mitochondrial diseases. His list of papers looks very interesting but unfortunately you don't seem to be able to get them online. Newcastle Uni seems to have a huge Mitchondrial Research Group with 45 researchers, which has to be good news - it may be worth my while getting in touch directly, doubt they can help me but I may be able to help them!

 
Old 07-20-2008, 03:41 PM   #12
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jaylite HB User
Re: Chronic Progressive External Ophthalmoplegia (CPEO) PART 2

Hi everyone...I just wanted to write in and let you all know that I've just started acupuncture/chinese medicine to see if that will do anything. A while ago, I was doing research on CPEO and came across some studies that were performed in China using acupuncture for CPEO with highly favorable results. The article only listed the abstract and I was unable to note if the CPEO of the patients in the studies was a side effect of some other disease or if it was mitochondrial related, as ours is.... Nevertheless I wanted to try it out. I just went yesterday for my third visit (it's a bit expensive and my insurance doesn't cover it.) I was very apprehensive about the needling around the eye, but it honestly doesn't hurt at all! There are needles placed all over the body as well. The doctor also put me on chinese herbs to combat the constant fatigue I experience. Since it's only 3 visits, it's a little premature to note anything as yet, but I honestly do feel as though a layer of tiredness is gone - not sure if it's just in "my head" - sort of a placebo effect I'm experiencing, but I am definitely going to keep going. Too soon to see if the eyelids are regaining muscle strength. He's only working on my left eye right now anyway... but I will definitely keep you all posted on how it goes.

Be well everyone and happy summer!

 
Old 07-22-2008, 03:28 PM   #13
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brizzie HB User
Re: Chronic Progressive External Ophthalmoplegia (CPEO) PART 2

I had my annual eyesight test today, pretty thorough, and had some good news - the ophthalmoplegia symptoms have apparently improved in the last 12 months and I have more movement in my eye muscles. The only things I have been taking are the 300mg CoQ10 daily, and recently a course of gelsenium (homeopathic) supposed to be for the ptosis which has shown no change (yet), so can't rule either out but I am inclined towards the CoQ10. Also no change in my prescription, which is also a first!

 
Old 07-23-2008, 01:29 AM   #14
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Smile Re: Chronic Progressive External Ophthalmoplegia (CPEO) PART 2

Dear all
I am new to this, but have had cpeo for about 25 years now and notice that a lot of you seem quite young. Was wondering if I can be of any help to anyone newly diagnosed. I am 47, have ptosis and restricted eye movements, some muscle weakness but generally doing OK. I was one of the first patients diagnosed with this thing in Australia and had a lot of tests, shown to other doctors, etc,etc. Not much fun at the time, but science seems to have come a long way now. The weirdest thing is I have muscular dystrophy in my family, on my father's side, so the doctors were pretty stumped for a while and now say it is just coincidence. I have special glasses designed by a friend, they are normal glasses, but with a pair of tiny fine wires on the above the lens on the plastic which are designed to hold up my eyes and are not really visible to others. they are sort of like little loops that stick out and are very comfortable and rest against my eyelids, making them lift up. I make them myself with dental wire which is pliable. I saw doctors re surgery but was always advised against it. I take q10 with?effect.
happy to chat
caffie

 
Old 07-29-2008, 01:52 PM   #15
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Re: Chronic Progressive External Ophthalmoplegia (CPEO) PART 2

Hello Caffie

Welcome on the message board! I'm Zofia from Holland and living in Poland. I have the diagnosis cpeo+ but don't know yet the dna problem that might be causing it.

I have also eyecrutches. Mine are liitle wires from titanium. Without them i'm practically blind. I also have opticus atrophy and 20% vision.

In the last week of august i'll have a pacemaker or defibrilator implanted. If anything goes wrong in the meentime they will do it sooner. Phew! Finally i'm able to sleep again i think!

zofia

 
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