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Old 03-19-2009, 12:45 PM   #31
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chchips1 HB User
Re: CPEO Part 3

Hi Everyone:

Regarding the "Mito Coctail" or what some would call "neutroceuticals" mix is explained to some extent are the following website: [url]http://www.mitoaction.org/blog/mito-cocktail[/url]
UMDF also has additional information on the mito coctail at [url]www.umdf.org[/url]

Regarding Mesitnon - I looked into this a few years ago. Sounded good to me even though it was for MG because it's supposed to increase tear production and better eye movement. Unfortunately it has a lot of side effects not good for those of us with Mito problems, first and foremost being muscle cramps and muscle weakness. I could not locate any studies that this drug was proven effective in CPEO or with anyone suffering from Mito disorders. Seemed like there were far more negatives that would outweigh any possible positive.

Have a great week.

Charlene

 
Old 03-21-2009, 02:15 AM   #32
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zofia HB User
Re: CPEO Part 3

Hello,

I've been using mestinon for some months and had lots of cramps and myoclonic jerks. also very bad diarrea.

With ubretid and later nivalin this was better, but i also felt that the effect was getting less after a while.

I thought it helped me because of a possible strong placebo effect. But maybe it helped a bit with the polyneuropathy I also have apart from the musscle weakness.

Zofia

 
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Old 03-22-2009, 05:42 AM   #33
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Diane1936 HB User
Re: CPEO Part 3

Charlene and Zofia,
Thanks for the input on the side effects of mestinon from your own experience.

 
Old 06-01-2009, 04:58 PM   #34
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di88 HB User
Re: CPEO Part 3

Hi, hope everyone is staying well.

My neurologist wants me to get a muscle biopsy to confirm my diagnosis. But I feel that there is a large chance that the muscle biopsy (from my arm) wont' show anything.

Did any of your muscle biopsy results change your treatment plans? Like did it show some major vitamin/ co-factor deficiency or something that could be repleted. Or did it show another problem that could be corrected? Or did it just confirm the diagnosis.

I don't want to undergo another unnecessary procedure at this point if it is not going to change anything.

Would appreciate everyone's input.

Thanks

 
Old 06-02-2009, 09:09 AM   #35
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jaylite HB User
Re: CPEO Part 3

hi Di,

I had a muscle biopsy a while ago and it merely confirmed that I had CPEO.... kind of wish that I didn't have it done (it's a little scar on my arm that's kind of noticeable - I had knee surgery when I was 16 and have a big scar on my leg that I am SO self-conscious about, didn't want yet another scar too!) but at the same time, it was I guess nice to have a definitive diagnosis...

 
Old 06-03-2009, 11:07 AM   #36
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di88 HB User
Re: CPEO Part 3

Quote:
Originally Posted by jaylite View Post
hi Di,

I had a muscle biopsy a while ago and it merely confirmed that I had CPEO.... kind of wish that I didn't have it done (it's a little scar on my arm that's kind of noticeable - I had knee surgery when I was 16 and have a big scar on my leg that I am SO self-conscious about, didn't want yet another scar too!) but at the same time, it was I guess nice to have a definitive diagnosis...
Hi Jaylite,

thanks for your response. Did you have any symptoms in your arm when you had the biopsy? My symptoms are mostly in my eyes and I feel that even though it would be nice to have the diagnosis confirmed, there is a large chance that the arm biopsy will be a false negative. And just to go thru another procedure that won't change anything is not so palatable at this time. Thanks for your input again!

 
Old 06-06-2009, 07:16 AM   #37
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Re: CPEO Part 3

Hello,

Iíve had a muscle biopsy from my thigh. It only showed swollen mitochondria, but then they also messed up. They only did the staining things. Never looked if there were ragged red fibres, never looked at my atp levels and they finally lost the specimen..

They suggested our daughter could have a biopsy too, but that is one of the things I wonít have her go through for the moment. So we decided Iíll have another biopsy this autumn.

Zofia

 
Old 06-06-2009, 07:37 AM   #38
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jaylite HB User
Re: CPEO Part 3

Hi Di,

Yes, surprisingly they were able to confirm a diagnosis from the ragged red fibers that appeared in the muscle from my upper arm (bicep) and I feel like my symptoms are most apparent in my eyes/facial muscles. I think that once we have this disease, ALL the mitochondria in our bodies are affected, just to lesser degrees. A doctor told me once that it is only more apparent in our facial muscles because those muscles are thinner than the others in our bodies - specifically those in our outer limbs (arms, legs, etc) So even if we don't really "feel" or notice any weakness in those muscles, they are also affected. I think that's where the "exercise intolerance" bit comes into play. I feel fatigued VERY quickly every time I run or exercise or dance. And surprisingly, when I do work out or exercise, my muscles respond very quickly and get toned right away, so I guess that's a good thing. Though I can't think of ANYTHING good about CPEO. It stinks. And I hate it!! Anyway - good luck! :-)

 
Old 06-06-2009, 07:39 AM   #39
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Re: CPEO Part 3

Quote:
Originally Posted by di88 View Post
Hi Jaylite,

thanks for your response. Did you have any symptoms in your arm when you had the biopsy? My symptoms are mostly in my eyes and I feel that even though it would be nice to have the diagnosis confirmed, there is a large chance that the arm biopsy will be a false negative. And just to go thru another procedure that won't change anything is not so palatable at this time. Thanks for your input again!

Hi Di,

Yes, surprisingly they were able to confirm a diagnosis from the ragged red fibers that appeared in the muscle from my upper arm (bicep) and I feel like my symptoms are most apparent in my eyes/facial muscles. I think that once we have this disease, ALL the mitochondria in our bodies are affected, just to lesser degrees. A doctor told me once that it is only more apparent in our facial muscles because those muscles are thinner than the others in our bodies - specifically those in our outer limbs (arms, legs, etc) So even if we don't really "feel" or notice any weakness in those muscles, they are also affected. I think that's where the "exercise intolerance" bit comes into play. I feel fatigued VERY quickly every time I run or exercise or dance. And surprisingly, when I do work out or exercise, my muscles respond very quickly and get toned right away, so I guess that's a good thing. Though I can't think of ANYTHING good about CPEO. It stinks. And I hate it!! Anyway - good luck! :-)

 
Old 06-07-2009, 10:31 AM   #40
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Re: CPEO Part 3

Zofia and Jaylite,

thanks for your responses- they were very helpful. At some point, i do think that I will get the biopsy, but I feel that its okay to wait- only because having the biopsy will not change anything.

Zofia- sorry to hear about how incompetently they handled your biopsy results. Good luck with the upcoming procedure.

 
Old 06-09-2009, 08:36 AM   #41
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chchips1 HB User
Re: CPEO Part 3

Hi Everyone:
It's been interesting to read about everyone's experience with muscle biopsy's. I haven't had one yet and think I would like to though. From what I understand taking the biopsy is easy however prepping and preserving the biopsy immediately is key to telling what kind of genetic readings they can get from the biopsy. To confirm CPEO I didn't need to have a muscle biopsy. My doctors at Columbia Eye Institute in NYC and my surgeon at LI Jewish Hospital both scanned and mapped my eyes. It was so long ago that I can't remember if it was a drink or a shot but my eyes were photographed. They could see the ragged muscle fibers in the photography etc.. Has anyone else had this same tracking and testing done to their eyes?
Also found in all my exams was the macular degeneration. This is really getting to me lately. At 46 I'm really beginning to have some of the vision loss at night. Anybody else having this problem? Have your doctors mentioned this to you?

Just curious...

Thanks,
Charlene

 
Old 06-10-2009, 09:05 AM   #42
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Re: CPEO Part 3

Charlene,

Interesting to hear that your diagnosis was thru some kind of imaging. I have not heard anything about such a test but would be interesting to find out more especially if it could confirm the diagnosis without having to have a muscle biopsy. Please let us know if u recall the name of the test.

Thanks

 
Old 06-10-2009, 03:00 PM   #43
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MissieFaye HB User
Re: CPEO Part 3

Hi.
I had the arm muscle biopsy. They found ragged red fibers.
I now have an ugly 2 inch scar (very visible and icky looking)
on my arm. Maybe I don't heal well. I don't know. It is all
puckery looking. I tried that scar-fade stuff, but no luck.

 
Old 06-11-2009, 01:33 AM   #44
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zofia HB User
Re: CPEO Part 3

Hello Charlene,

Since my fifteenth, twentieth I have had trouble with my vision at night. I never managed driving at night.

Finally I also couldn’t walk alone in the dark. Some years ago I started having trouble seeing during the day, especially in gloomy circumstances.

Also everything I see seemed to be made out of gravel and is blurry. I thought this must be m.d. , but it wasn’t: I have atrophy of the optic nerve.

Zofia

Last edited by zofia; 06-12-2009 at 10:14 AM.

 
Old 06-11-2009, 11:44 AM   #45
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chchips1 HB User
Re: CPEO Part 3

I'm trying to get in to see my doctor and I'll get the name of the test which was run. I've got new insurance and my doctor isn't covered on it so it's a problem.

charlene

Quote:
Originally Posted by di88 View Post
Charlene,

Interesting to hear that your diagnosis was thru some kind of imaging. I have not heard anything about such a test but would be interesting to find out more especially if it could confirm the diagnosis without having to have a muscle biopsy. Please let us know if u recall the name of the test.

Thanks

 
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