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Neuromuscular Diseases Message Board
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Old 03-31-2010, 06:08 PM   #16
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lmx82 HB User
Re: CPEO information

Any experience out there with creatine? I have not tried before, but thinking of it. Just curious if anyone has used this for CPEO.

 
Old 06-18-2011, 06:42 AM   #17
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Re: CPEO information

Hi There
I was just reading your post. I too just found out in the past couple months that I too have cpeo, I am suppose to go for the muscle biopsy, and after seeing it done on utube. I am well not too sure. It looks very painful!!! So tell me please how was that?
How was your eye surg.?
I have hearing loss and no signs yet of the droppy eyes. They feel weak so if there is a droop it is not noticeable yet. I am always tired though, its a struggle to get out of bed some days.
Please keep me posted on your health.
thanks

 
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Old 07-02-2011, 07:15 AM   #18
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Re: CPEO information

Hi,

I never had the muscle biopsy, but I think its a relatively straightforward procedure.

My eye surgery went OK. Had both eyes done the first time but the left didnt take real well, so I had to have that done again a few months ago. Now I think both eyes are better, I can certainly see better. Was hoping for a better cosmetic response but my wife and co-workers said it looks better than before. Overall, the surgery wasnt too bad, not really painful at all.

Luckily I dont have a lot of weakness, my symptoms are just about limited to my eyes. You might try some of the vitamins and see if that helps with energy. I take a bunch (coQ, riboflavin, etc) but dont notice much difference with my eyes.

Good luck!

 
Old 07-02-2011, 08:16 AM   #19
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Re: CPEO information

Hi,
Thanks for the reply! I have been taking vitamins, I have also started with the coQ10. Seems most people with this are taking that, so i got me some! have no idea if they are working but my fingers nails are looking better then ever!!!
Still have not had the appointment for the muscle biopsy. Arms and legs are weak eyes feel heavy. And I am still terribly tired. I think that is the worse for me, trying to get out of bed in the morning.Headaches are not too bad either right now.
There really is not a lot of info on the net. Every case is so different. I can't find anyone in Canada to talk with either.
Anyway thanks for the reply!

jayme13

 
Old 08-01-2011, 07:40 AM   #20
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BYU1972 HB UserBYU1972 HB User
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.

 
Old 08-01-2011, 08:04 AM   #21
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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 was told to take besides flax seed oil. thanks for any input.

 
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