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Neuromuscular Diseases Board Index
Pages: 1 2 3 Showing 1 - 20 of 63 for cpeo disease. (0.001 seconds)

... I know this site gets people with CPEO from all over however I was wondering, of those of you in the USA, did anyone make it to the United Mitochondrial Disease Foundation's symposium? ... (80 replies)
... as well as Parkinson's disease, cancer and diabetes. It's still controversial but the studies I saw regarding CPEO had the person taking a high dose 300MG per day and after a period of a year or two some symptoms were observed to reverse. I believe it was muscle strength. ... (96 replies)
... el concerned that any children I had would have would develop any of the numerous inherited conditions in my maternal family. We are to date unsure of where my CPEO has come from! I did however a little research and found out that CPEO is a recessive gene. ... (96 replies)

... virtually no resources or information on Mito disorders. I was flying "blind". I was told it would only effect my eye and that there is a cardiac connection. CPEO patients can develop cardiac arithmias. Although rare it happens and maybe later I'd need a pacemaker. My eyes were status quo for many years. ... (19 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)
... urgery to try to get it to close. I still have some exposure keratopathy and use eye drops during the day and lubricant at night. That surgery was well before my CPEO diagnoses in 2000 at Walter Reed. I was sent there by an astute otpthalmologist with an interest in inherited diseases. ... (77 replies)
... I'm learning that it's the nature of a mitochondrial disease to have multiple problems which cannot be positively attributed or even refuted to be part of the disease. ... (96 replies)
... cycling is none existant. Anybody else suffer from breathing trouble and had a diagnosis related to CPEO or mito disease? ... (55 replies)
... He actually recommended that those of us with symptoms of CPEO should also have our thyroids checked. Some thyroid problems will either mimic CPEO symptoms and or will axacerbate our symptoms. I haven't read or heard that anywhere. ... (77 replies)
... Charlene, this is true. - it is a fault in the mitochondrial DNA. My specialist explained it to me as being something to do with the egg, hence since men don't lay eggs... unless maybe, French Canadian men??? Zofia, I have never heard of any heart problems associated with CPEO, although two of us here had heart murmours once, likely unrelated. KSS, a related disease, does... (80 replies)
... m 31, and I have CPEO since I was 7 years old. At that time my lids were open normal when I was about 17, my right lid started going down. ... (96 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)
... Hi Torontohrb Your situation sounds very different from anything I've experienced. When I began to investigate my eye problem my neurologist originally thought of "OCULAR Myasthenia gravis". General myasthenia gravis involves the entire body which is different. It's been so long that I can't remember the test exactly but they were able to run a test for ocular myasthenia... (80 replies)
... After some tests, my neurologist believes what I have is not Myasthenia Gravis, but CPEO. My neurologist was also very curious how my Chinese doctor treats this disease and asked me to contact my Chinese doctor. ... (80 replies)
... Hi, thanks for replaying. Feel good after you wrote.. This is new for new, even i had this for many years. But finding or understanding what it is is hard. I feel like i'm defective... Anyway i'm taking the q-10 x 400 mg. And l-carnitine, b12 and feel better wth more energy, specially in the gym. I hate morning i fell like pain even if haven't workout the night or... (96 replies)
... I too was diagnosed with CPEO and worried about family inheritance. ... (96 replies)
... d taken at that time since it was too small. I never had another one done until 2 years ago, when my symptoms seemed to worsen and I just wanted to confirm that CPEO was indeed what I had. ... (96 replies)
... chinese medicine to see if that will do anything. A while ago, I was doing research on CPEO and came across some studies that were performed in China using acupuncture for CPEO with highly favorable results. ... (80 replies)
... as far as I know. Because of that a treatment with prednison might be beneficial with derma myositis, as is gamma globuline. Unfortunately this has no effect on cpeo at all. ... (96 replies)
... It was my neurologist that mentioned CPEO is associated with Sleep Apnoea as I mentioned it in my last consultation with him when we were discussing briefly the DNA and genetic factors. ... (96 replies)

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