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Old 05-23-2011, 03:24 PM   #3
jayme13 jayme13 is offline
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(female)
 
Join Date: May 2011
Location: Ontario Canada
Posts: 16
jayme13 HB User
Re: Chronic Progressive External Ophthalmoplegia (CPEO)

Hi thank you for getting back to me. I hope you get this. My first time here and my first reply! lol
I had a heel spur a few yrs ago and had 2 Cortisons shots and they where amazing. Really helped the heel. Just have a bit of one there that hurts once in a while but nothing like it did. I also take b12 shots every month.
Like in my post I started getting the hearing loss then the double vision.
It has taken 7 yrs for these dr. to finally tell me I have C.P.E.O. I think so far not including family dr. I have seen 4 doctors. I am waiting to see a neuro ophthalmologist.They want to do a muscle biopsy, this will be my 5th specialist. I don't have the droopy eyes yet (and I pray I don't) but to read or write I have to close one eye to avoid the double vision. My eyes don't move all the way to the sides. Its my hearing that I have a really hard time with. I have none in my right and lave lost about 60% in the left. It is so hard to communicate with people and when you are out and its loud the hearing aids turn all that noise up so you can hardly hear people. They help a lot, I would not get through a day with out them but they are by far as good as your own hearing.
Please keep in touch with me, its nice to have someone to chat with that has this same problem.
Do you know what any long term effects will be. I at times can see the struggle getting up the stairs and my arms are weak. I am concerned about having to be in a wheel chair one day if I loose a lot of leg muscle.

talk soon and thanks again.

 
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