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Old 05-24-2011, 09:32 AM   #7
Join Date: Mar 2011
Location: Tampa, FL
Posts: 73
BYU1972 HB UserBYU1972 HB User
Re: Chronic Progressive External Ophthalmoplegia (CPEO)

First, i am at work now, wearing sunglassed b/c my eyes hurt and are burning. I have some good days and some bad days. Yesterday my eyes didn't burn at all so I wore my regular glasses but today... eyes are burning. Yeah, CPEO is so rare, it is one of a dozen rare gentic mitochondrial diseases. Yeah, i'm not a cryer usually so I've been calling my mom cause I come home after work and eyes are droopy and sting and I don't know what is going to happen with muscle weekness or fatigue... so anyway... Also, i know so many others who are going thru their own trials as I mentioned and I am a Christian, I am just longing for support and empathy. so, Frontails Sling. Aparently they use muscle to do the lift and you use your eyebrows (I think) to lift your lids. I was already to go to this dr. in Tampa to get the lower then upper lids lifted then H dr told me no, to do Frontails Sling. I think with CPEO, that is the preferable surgery....
so i go to Rheumatologist Friday and I feel very very old. I have to be thankful that I have my vision and i'm hoping some happy pills will give me a boost. also as i said b/f i think crying might possible be drying my eyes out more, not sure about that though. This all happened rapidly after about six months after I moved from TPA to MD. So maybe stress (also it took me a good four months to get a job- I did a bit of crying then too- till i got my job). then probably that winter, eyes began to droopy a tad and eyes b/c sensitive to lightn then not till about six months ago till work b/c difficult with computer. So, I'm trying to do a 180 with my attitude but i'm having a hard time. esp since was recommended no surgery for now and there is no cure or treatment. I'm so sorry about your hearing, that must be so hard, b/c that is an unusual symptom that I haven't heard anyone having.... I really will be praying that your eyes don't droopy. I'll be anxiously waiting for your next support post for me i love you CPEO sister lol