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Old 05-24-2011, 02:30 AM   #4
Join Date: Mar 2011
Location: Tampa, FL
Posts: 73
BYU1972 HB UserBYU1972 HB User
Re: Chronic Progressive External Ophthalmoplegia (CPEO)

J, yeah, i've just gradually gotten droopy eyes last 18 months. Dry eyes are my biggest problem. I do worry about being in a wheelchair esp. since I have Sjogrens. Before I was diagnosed, I did lots of research and read case studies and one lady ended up in nursing home. She was 50 something. For me I cry all the time so plan to ask Dr for some type of lift (mood). I'm thinking a lot of arthritis and also I have big time neuropathy in my feet, lower legs. When i talked to Dr. at hopk, he really couldn't answer my "future" questions. He said this disease is so rare it affects everyone differently. I have a lot of feet weekend, neauropathy, droopy eyes and limited eye movement. You have the hearing loss and the beginnings of eye issues. Let's hope no droopy eyes for you. My eyes are burning honey, this computer is killing me.
I wish we could form some type of support group or something. I know so many who are suffering in different ways, divorce, custody battles, loss of employment, etc. Trying hard to be thankful and not think about the future since I dont know what is going to happen. I don't have much muscle weakness that I know of but I do feel a bit wobbly when walking sometimes when wearing anything but tennis shoes. but it is becoming challenging to do my little Pilates routine (beginning- stretching mainly).