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Old 01-13-2009, 07:46 PM   #16
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Diane1936 HB User
Re: CPEO Part 3

Sandy,
The information on Cyto-Q is very helpful and it sounds as if that is what I should be taking. I will tell my doc about it. He is eager to learn more about the disease.

 
Old 01-14-2009, 12:57 PM   #17
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di88 HB User
Re: CPEO Part 3

Sandy and Charlene- thnx for the cytoq and liquid coenz q info. Will have to try it out. I just started taking oral coenzyme q 150mg daily--haven't really noticed much change- but its hard to say.

Charlene- In response to your reply, i'm 25 and have had this problem for about 8 yrs now. My vision is not too bad, my biggest problem is the ptosis- since it is so prominent in my one eye- it is such an imbalance between the two eyes that i have a hard time just seeing and keeping my eyes open.

I have noticed problems with depth perception....doing minute tasks and such (like putting thread thru a needle) , i usually end up closing my left eye. i get double vision with these tasks. I think it is because of the ophthalmoplegia. Normally when people do small tasks and for depth perception, their eyes converge, but because of the ophthalmoplegia the eyes don't covernge or do so unevenly either producing problems with depth perception or giving double vision. Thats my theory at least--will cofirm it with my neurologist at the next visit.

What dosage of the coenzyme Q do u all take. Do you all take any other supplements besides just basic Multivitamins?

thanks all

 
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Old 01-16-2009, 11:32 AM   #18
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Re: CPEO Part 3

Di,
It is awesome to read my symptoms in your post. I also have been closing my left eye in order to focus better. It is not something I would even think to mention but I have been doing it for years. The left eye is my weakest and now has the most severe ptosis since the right eyelid had a lid resection over 30 years ago. I hope that UMDF does allow us to share more of our personal history through the local groups. I will join the Baltimore group, but look into attending the NY one. I come up to NYC at least 4 times a year and have distant relatives on Long Island. Maybe our mitochondria are related.
Diane

 
Old 01-19-2009, 06:38 PM   #19
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sandwood HB User
Re: CPEO Part 3

Diane,

I have prisms for both my reading and far glasses; with much more in the reading. This use to allow me to read with both eyes, but now it doesn't help as much so usually close my right eye. I do best on LCD screens for reading. There is a new Mito support group at Columbia P University in NY. I was seen there twice so I guess I'm on their mailing list.

Sandy

 
Old 01-20-2009, 12:41 PM   #20
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MissieFaye HB User
Re: CPEO Part 3

Hi,
I'm new to this board, but not new to CPEO. I'm not really up to date on what's going on with CPEO research, but I'm guessing nothing.
I have the eyelid ptosis in my right eye only, but the paralysis is in both eyes and getting worse all the time.
I had the frontalis sling surgery in 2007 and have been depressed about my situation ever since. The surgery totally screwed up my eyelid. The skin got all shiny and thick and never returned to normal. The worst part is that the doctors don't seem to care. I really need to get back to the eye clinic because the sling needs to be adjusted (lifted further), but after my last experience I am afraid to go back. I just want to look semi-normal. I am very frustrated.
Has anybody had this experience? Any ideas? I have wondered if my eyelid is just a mass of scar tissue and whether I should try some of that old-scar-healing stuff they advertise. Then again, I'm not sure I want to put that stuff so near my eyes.
I haven't read many of the other posts yet. Can anybody give me a brief synopsis of where the medical community is on treating this?
Thanks.

 
Old 01-28-2009, 06:58 AM   #21
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sandwood HB User
Re: CPEO Part 3

Hi MissieFaye,

Sorry to hear about your messed-up lift. I too have more severe ptosis in the right eye. As to what to do and who to see I'm at a lost. I think I'm not going back to my neuro-ophthalmologist in March. I'm sure he's great for other problems, but not mine. I'm getting a lot more light in my right eye, so I think something internal is going on. I told him about it and he wasn't interested. I asked about a little hit of botulism in my right forehead just the relax the muscle, make it look normal, and he was totally against. Then the next year he suggested a little hit of botulism in my right eye lid to kept it closed to stop the double vision. Can you imagine how that would look!!! Don't they think we exist in a world. The next year I told him what he suggested both years and he gave a shy grin, he knew it was just silly. He's getting close to retirement. Maybe I should see a young eager neuro-opht, but they can be dangerous too. Two weeks before Christmas I saw a new young dermatologist. I had chapped lips, she directed her resident to take a little shave. I say, I had a few get togethers, not a problem a little red for a couple of days, that's all. Well, let me tell you, a chunk of the lip was gone, very unsightly and sore. I hope the PDT takes care of the scar.

On another note I have been assessed by two muscle biopsies, actually three but one doesn't count, with a positive mtDNA deletion/duplication, complex 1 deficiency, ragged red fibers and so on. But sporadic inheritance didn't address my autosomal dominant family's brain-muscle disorder. I have more then mild peripheral neuropathy, I have something central going on affecting voice, breathing, teeth, pupil and so on. I'm looking into one of the ad inherited ataxia disorders now. My father has CMT with ataxia. The SCAs also have CPEO, ptosis, neuropathy, and most of the other things found in my family. So many other diseases are finding positive mito mutations, including cancers, that it's not a final diagnose, at least not for me. In a multi-symptom disorder it's hard to decided what specialist to go to. I asked my neurologist about it and he suggested another type of neurologist. So, I'm on my way.
diane-I will try to find the number for the support group, today, I'm snowed in.

Bye,

Sandy

Last edited by moderator2; 01-28-2009 at 07:11 AM. Reason: disallowed use

 
Old 02-02-2009, 01:32 PM   #22
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chchips1 HB User
Re: CPEO Part 3

Hi MissyFaye and Sandy:

MissyFaye- Sorry to hear that you are having such problems with the sling surgery. There have been a few people on this message board who have had/having problems with theirs as well. I guess I'm one of the successes. There is only so much the surgery can do though and I think sometime people may be dissapointed with the results because their expectations were too high.

Our ever changing health condition along with the progression of the CPEO may cause some problems down the road. All the doctors I went to were very careful to list both the pros and cons.. Because there were cons that's why I liked the frontalis sling surgery. I could reverse the procedure if it didn't agree with my own particular set of health issues.

I investigated for a full year prior to the surgery. I got three opinions and would have continued if I wasn't certain of what or who to go with. I urge everyone in the group to be their own health advocate. Question the doctors and if you don't get a helpful informative response then move on to the next. I think you also need to think of smart thought out questions to ask.

Do you have exterior scar tissue? The frontalis surgery is for the most part unseen. The only scars you should see should be near you eye brow? I would also talk to your doctor about your tear production... Is there a reason they set your lid at it's current level? The doctor should take your tear production into consideration when even performing this procedute. I have one eye slightly lower than the other. Not happy with it but my doctor forwarned me going in that he was doing that because my eye was weaker than the other in all aspects. To lift the lid any higher would cause problems. I still went ahead with the surgery and I hate to think of how I'd look without it. Anyway, maybe this will help you troubleshoot.

Sandy- you sound like you've got a lot of other medical problems besides the CPEO.. you wrote that you asked about botox inj for your forehead. Think about this.....Do you think any kind of botox injection would be wise when the problem with CPEO is muscle paralysis? I am glad your doctor was totally against it. You have the sling? So the muscle probably looks likes it's tight because it is in fact lifting your eyelid up. It's the brow muscle that the sling is attached to lift your lid and it's doing it's job. I'm amazed that this doctor even joked about botox in the eyelid. I hope he was joking... If not... please seek another doctor who will take every complaint seriously.

Hope everyone has a great week!


Charlene

 
Old 03-05-2009, 09:39 AM   #23
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zofia HB User
Re: CPEO Part 3

Hello,

Itís been a while since Iíve been here. Iím really worried at the moment because our youngest daughter will be tested starting next week. I will join her in hospital. We have to stay there a week.

She will have emg, mri, eeg, lactate, and blood dna tests. For the moment fortunately no biopsy yet.

It will be very difficult, because she has the understanding of a 2year old(sheís 5) she is also verbally behind.

I am rather handicapped (wheelchair, low vision, a.s.o.)and no language wonder of the polish language either. So weíll be a special mother and daughter team!

As far as Iím concerned, they found out that not only my vision is diminished because of the optic atrophy but also the width of my vision( I donít know the word in English). On top of the ptosis and difficulty of moving my eyes.

I never realized so many things could go wrong with your eyes. My youngest daughter already has a slight ptosis.

Some years ago I was examined by a prof in Holland. He has now written me that he thinks I may have kss after all. I was never tested for kss, because this normally has a much earlier onset.

Bye, Zofia

 
Old 03-08-2009, 01:59 PM   #24
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di88 HB User
Re: CPEO Part 3

Quote:
Originally Posted by zofia View Post
Hello,

Itís been a while since Iíve been here. Iím really worried at the moment because our youngest daughter will be tested starting next week. I will join her in hospital. We have to stay there a week.

She will have emg, mri, eeg, lactate, and blood dna tests. For the moment fortunately no biopsy yet.

It will be very difficult, because she has the understanding of a 2year old(sheís 5) she is also verbally behind.

I am rather handicapped (wheelchair, low vision, a.s.o.)and no language wonder of the polish language either. So weíll be a special mother and daughter team!

As far as Iím concerned, they found out that not only my vision is diminished because of the optic atrophy but also the width of my vision( I donít know the word in English). On top of the ptosis and difficulty of moving my eyes.

I never realized so many things could go wrong with your eyes. My youngest daughter already has a slight ptosis.

Some years ago I was examined by a prof in Holland. He has now written me that he thinks I may have kss after all. I was never tested for kss, because this normally has a much earlier onset.

Bye, Zofia
Zofia,
You definitely are one brave mother/daughter team! Hope that things turn out better for your kids- hoping that the medical community finds some form of treatment/ cure for this horrible disease. You mentioned that you might have kss- have u had your heart checked out? Many people with mitochondrial myopathies can have conduction defects in their hearts- which can be easily corrected with a pacemaker- so it might be something u may want to discuss with your docs. Let us know how everything turns out.

 
Old 03-08-2009, 02:08 PM   #25
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di88 HB User
Re: CPEO Part 3

hi everyone,

i just started taking some coenzymeq10 for my cpeo. I can't really say that it has helped any- but i just keep taking it probably more for psychological reasons.
Was wondering if there was any other supplement that anyone was taking (besides the basic vitamins and such) that has helped at all.

would appreciate all your responses
thanks

 
Old 03-09-2009, 06:19 PM   #26
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Diane1936 HB User
Re: CPEO Part 3

My new neuroglogist prescribed a mitochondrial cocktail: CoQ10 200mg, one tablet 3x a day (600 mg.day); Carnitine 330 mg up to 3 tablets 3x a day, 990 to 2700 mg/day; creatine 5g poweder, Take daily with juice; Mastinon tablets 60 mg, one tablet 3x a day(180 mg/day). He suggested that I start with one of these nutraceuticals so I started taking Coq10 in December. I have just started to feel some results. I have a lot more energy. I am careful not to take it late in the evening because it causes insomnia for me. I am not sure if it translates into anything related to my CPEO but I do feel better overall. I was taking over the counter CoQ 10 but after reading a posting to this site I asked my doctor to write the prescription for Cyto-Q,ubiquinol,the nano liposomal liquid form. I am to start that this week, and was told that my insurance (Medicare and Tricare for life) does cover it. I am not sure if the Carnitine, Creatine and Mestinon is covered by insurance and I am not sure if I will start on any of them in the future.. Many thanks for the helpful input.

 
Old 03-14-2009, 12:11 PM   #27
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zofia HB User
Re: CPEO Part 3

Hi Di88

Sorry I didnít write sooner, but we just got out yesterday. Our bad dream has come true: they found our sweet little girl has a brain damage caused by insufficient oxygen and she also has a too high lactate level.

We expected bad news, but still it was like a bomb dropped on us. Next week hopefully weíll get more information from the Prof. they also are considering the possibility of k.s.s in our daughter.

By the way, I have had 2 heartblocks half a year ago and have had a pacemaker implanted already..

Zofia.

 
Old 03-17-2009, 09:24 AM   #28
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zofia HB User
Re: CPEO Part 3

Quote:
Originally Posted by Diane1936 View Post
My new neuroglogist prescribed a mitochondrial cocktail: CoQ10 200mg, one tablet 3x a day (600 mg.day); Carnitine 330 mg up to 3 tablets 3x a day, 990 to 2700 mg/day; creatine 5g poweder, Take daily with juice; Mastinon tablets 60 mg, one tablet 3x a day(180 mg/day).
Hello Diana,

Thatís interesting that your doctor subscribes mestinon. At first my doctors thought I had a myasthenia.

They subscribed at first mestinon, then ubretid en then I had to take injections with nivalin.

These medicines are all acetylcholine stimulating medicine. I had the idea that it was (at least for I while) beneficial for me.

When they quitted the idea of myasthenia, they stopped the subscription of these medicine too.

How do they explain the benefit from mestinon to you?

Zofia

 
Old 03-18-2009, 01:17 PM   #29
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di88 HB User
Re: CPEO Part 3

Diana and Zofia,

I had the same question for u Diana as Zofia. I have never tried mestinon but do u think it provides any symptomatic relief- specifically with the ptosis? Is there any harm to using it?

Zofia: I am sorry to hear about your daughter. Hopefully the doctors can figure out some intervention to prevent further damage- but sadly as you know there is little consolation for this disease. But your daughter will have you as a support system and can know that u will understand what she goes thru.




Quote:
Originally Posted by zofia View Post
Hello Diana,

Thatís interesting that your doctor subscribes mestinon. At first my doctors thought I had a myasthenia.

They subscribed at first mestinon, then ubretid en then I had to take injections with nivalin.

These medicines are all acetylcholine stimulating medicine. I had the idea that it was (at least for I while) beneficial for me.

When they quitted the idea of myasthenia, they stopped the subscription of these medicine too.

How do they explain the benefit from mestinon to you?

Zofia

 
Old 03-18-2009, 06:20 PM   #30
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Diane1936 HB User
Re: CPEO Part 3

Di 88 and Zofia, I was not given any significant information about the mitochondrial cocktail components, just that this was what was being recommended in the literature. I did a bit of a literature search myself and could only find documentation for the use of CoQ 10, and I found out about Co-Quil. The doctor had told me to start off with just one of the nutraceuticals, so I opted to start with over the counter CoQ10 which was costing me between $30 and $90/mo. When I read on this thread that the specific formula CoQuil might be covered by insurance, I asked the doctor to prescribe that. It took a few months, but he did send me the prescription. It took my drug store almost two weeks to get it, but I started on that nano, liposomal, more biologically available liquid formula today, 80 mg 3xday. The cost is $ 210/month but my insurance is covering it so thankfully my cost is only the $3.00 co-pay for a months supply.I do not plan to take the other neutraceuticals until I know more about their side effects and cost. The OTC CoQ10 has given me more energy, but it took several months for me to feel that. I am not sure of any effect on my ptosis at this point. I was taking 200 mg 3 x a day.

 
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