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Old 05-26-2011, 06:41 AM   #9
BYU1972 BYU1972 is offline
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Join Date: Mar 2011
Location: Tampa, FL
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Re: Chronic Progressive External Ophthalmoplegia (CPEO)

J, i am married, this is year 10. He doesn't really understand and can't help but try to keep the lights he turns on to a minimum. He was able to go to H with me along with my mom (who, to answer your ques. she FLEW from FL to MD, just for my Hopkins Dr. Appt. So I guess I do have support. I have on facebook, but b/c computer bothers me so much, i try to stay off it after work. I wish we could get together at some mtg point and meet up, anyway, what kind of muscle biopsy (in the corner/white part of the eye). One dr did eye lid biopsy but according to one current dr i've seen, a thigh muscle biopsy can me done to confirm. Just pls make sure your lab goes to somewhere close and if the biopsy is sent for further... make sure a frozen sample is saved b/c the new lab will need it. when i had my eyelid biospy done, apparently the lab here locally "processed" results those results were sent to mayo and they needed frozen sample. Results were inconclusive but wish i would have gotten the biospy done somewhere else. Also, my family wants me to get thigh biopsy but since two dr. (like you) said I have cpeo (not just suspected), one said clinically I have CPEO, I'm not going to bother now. esp since no cure, no meds and dr said don't do frontalis sling surgery now, and we have no idea what symptoms will apprear and how soon or when. i'm not going to bother. talk soon my friend

 
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