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Neuromuscular Diseases Board Index
Pages: 1 2 3 Showing 1 - 20 of 63 for cpeo disease. (0.009 seconds)

... Many thanks for your post! REALLY interesting to hear from somebody who have had the disease for so long! 30 years... ... (26 replies)
... movement all caused bad dry eyes and were unsuccessful so this is my last hope. To end on a positive note as I am running out of space, it is a very slow moving disease and neednt stop you living a full and happy life if you work round it, if I can help in any way please ask. ... (26 replies)

... se movement of other eye muscles as well which happened slowly over many years. I have generalized fatigue as well. I am not sure if hearing loss is typical of cpeo but mitochondrial myopathies run across such a spectrum that its probably not completely unusual. Hope this helps. ... (26 replies)
... big big thanks for reply (i can barely see, so navigate through my typos please. Can't seem to get the "l" out of my lines!) for how long did the pain continue *after* this biopsyl? My view is that at my agle--83+--there is little hope of what thes shamans choose to call "treatment" so why bother with all these costly tests for an incurable disease? "costly"... (26 replies)
... he "ragged red fibers" which is consistent with CPEO..but they also did genetic testing which showed a mutation of a gene that is consistent with a mitochondrial disease called MELAS. The biopsy wasn't too bad but super sore afterwards. My MRI showed nothing as well. Double vision is a symptom of some mito diseases. ... (26 replies)
... I just wanted to know if anyone else is experiencing the same thing. This disease seems very rare and is not treatable. Anyone? ... (26 replies)
... Moseydogblue, I'm happy to hear your eyelashes will be out of your line of vision. That's how my left eye was and it was extremely annoying for me. My right eye was raised higher and my eyebrows are off but I'm used to my eyes not looking the same. ;) I bet you will love it. I do have to use genteal gel three to four times during the day and genteal nighttime ointment at... (6 replies)
... I wanted to reply directly to Msbnana but don't know how! Hi Msbnana, Not sure you are going to see this because I notice you only posted once and that was a few months ago.... Just wanted to tell you that when I read your post about your experience with CPEO, I couldn't believe how similar my situation is! I'm also an actor and it has plagued me so much!! You are... (55 replies)
... cycling is none existant. Anybody else suffer from breathing trouble and had a diagnosis related to CPEO or mito disease? ... (55 replies)
... PEO, we all have had very different symptoms at different times. I am 39 and was just diagnosed this year. It is very scary because it is a rare Mitochondrial Disease and there is no form of treatment or cure. ... (55 replies)
... I, too, have CPEO or The Chronic, as I call it. It showed up in my left eyelid when I was 16. At 20 I had an eyelid lift. ... (55 replies)
... thritis 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. ... (55 replies)
CPEO 2011
Mar 28, 2011
... I am currently dealing with CPEO having been diagnosed in 2008. ... (22 replies)
... I have CPEO also in conjunction with a neuromuscular disease. ... (28 replies)
... min. to get going again. It is a great disease for meetings as you can sleep through them with not problem except getting poked by your wife. ... (77 replies)
... Hi Charlene, I have had CPEO for about 18 years but was only diagnosed about 11 years ago. I haven't done much research on it. ... (77 replies)
... I just saw your recent posts. Sounds like you might need a new doctor. I'm afraid that there are not many docs out there familiar with mitochondrial disease though. To begin, sounds like your doctor is only familiar with the surgery where the muscle is ties off and shortened. This is irreversable etc.. ... (77 replies)
... oblems... I don't want to be treated like I've got problems. I've only recently started telling people about it but no one is really aware of what mitochondrial disease is.. when you explain it I don't think most people understand. ... (77 replies)
... Hi Di, Yes, surprisingly they were able to confirm a diagnosis from the ragged red fibers that appeared in the muscle from my upper arm (bicep) and I feel like my symptoms are most apparent in my eyes/facial muscles. I think that once we have this disease, ALL the mitochondria in our bodies are affected, just to lesser degrees. A doctor told me once that it is only more... (77 replies)

Associated Tags: chronic progressive external opthalmoplegia, cpeo, neuromuscular disease, ptosis

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