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Neuromuscular Diseases Board Index
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... ialist in Dublin but at that time the muscle biopsy was inconclusive. After the symptoms worsened I went back for a second investigation and I was diagnosed with CPEO in 2005. ... (0 replies)
... hi does anyone know about cpeo and immgration process i was resently told that i have this condtion regards (0 replies)
... The most severe way in which I am affected by CPEO is in my left eye which has become progressively more and more droopy over the last 15 years. ... (55 replies)

... Yes I have had ibalance problems, eye muscle weakness, weakness in arms and legs, my feet keep going numb and soetimes my hands, and get tired easily. I was tested for ms, mnyastheia gravis. I have had about four mris, they looked for nerve palsy in a mra. Now my nuero opthamologist thinks it is CPEO. I had test for gene testing the other day. He has not said anything... (26 replies)
... My nuero opthamologist has ordered blood test for genetic testing and my insurance has finally approved it. I am wondering if anyone has had this test before. I dont know why he does not do a muscle biopsy instead but I dont really want one. He is pretty sure I have CPEO. (1 replies)
Cpeo
May 12, 2013
... That is about it I guess. Oh yes and I am 51 years old. I hope I get diagnosed soon or find out if it is cpeo or not. ... (0 replies)
... I am optimistic about the future , hopefully the sling operation will make a big difference but having read some of the posts I now realise there could be some complications but as itis my only option I want to have it done. To answer your questions campal, I was diagnosed about 15 years ago, for the previous 15 or so I was seeing an eye specialist regularly for droopy... (26 replies)
... bullfinch -> Thank you for responding! I thought you were a lot older, sorry :) I'm glad you feel like you've had a good life so far, what are your concerns about the next twenty years, how do you think they will be? Good? Bad? I have some more questions, and it would be nice if you would answer (if you want to!). How old were you when you were diagnosed with CPEO? Do you... (26 replies)
... BYU1972 -> I sholdn't have said anything... Today my eyeballs HURTS! It's an aching kind of pain that I almost can't even describe. I have cried a lot, and I feel that it's not fair. The whole world is against me and I'll never be able to get up! So it feels. This is only the beginning of a lifetime in pains... It's hard to be positive sometimes. As you hear, you don't have to... (26 replies)
... BYU1972 -> It seems that you and I both have had our first real symptoms and healthcare contacts in year 2010. I'm not experiencing sensivity to light though. Maybe I will soon... Oh my god, how terrible to be forced to have sunglasses all the time!!! What kind of job do you do? Are you working right now? I'm a receptionist at a big, global company, and I can't imagine my... (26 replies)
... Hello everyone I only found this site a few days ago and am amazed. I have had cpeo for over 30 years and never met or heard of anyone else with it so it has been a real eye opener for me to find people who share my experience and understand some of the problems . I must say to start with I do have a lovely family who are a great support and also all in the medical... (26 replies)
... SO IN A NUTSHELL IF GOING UNDER IS SUITABLE FOR YOUR HEALTH CONDITION CONSIDER IT........I DID GET A CONFIRMED DIAGNOSIS OF MITOCHONDRIAL DISEASE AND DO HAVE CPEO WITH PTOSIS........ ... (26 replies)
... I have been experiencing a feeling in my eyes like blurriness or wateryness. Is this a symptoms of CPEO? I have been trying to find out what the exact first symptoms are. I also have had weakness and numbness in both my legs for over 6 months, along with other symptoms. The eyes and legs weakness seem to go hand in hand. I would appreciate knowing the symptoms that come on... (0 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)
... I was recently diagnosed with CPEO and feel crappy all the time. ... (55 replies)
... Leeshore, I had my biopsy done and it showed the "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. My blood work... (26 replies)
... Diagnosed last week mri sceduled for 20 november. Had one in may which showed everything fine but this lneurologist wants to find something *wrong* so i have to go through it again. Blood taken last week,no reportyet. Tell me about your biopsy, please. They're going to do *that* to me (gleefully rubbing their hands in anticipation) on 5th december. I have hearing loss,... (26 replies)
... Hello, My name is Nicole and I just recently underwent a muscle biopsy to see if I have cpeo. My initial complaints were headaches, hearing loss and losing weight. My dr. sent me to a neurologist, ENT, and an oculoplastic surgeon (because I wanted to get my ptosis taken care of). They all suggested having an MRI to rule anything serious out, plus a bunch of blood tests. My... (26 replies)
... Has any CPEO sufferer had a Gore-tex frontal lift? (0 replies)
CPEO 2011
May 4, 2012
... hi, well... now I am back in Florida with heat but waiting for humidity to kick in. I have done so many hot compmresses and put so much gel in my eyes... I will tell you my main thing that makes in difficult to function in light sensitivity. I do have terrible Chronic Dry Eye Syndrome however the extreme light sensitivity sucks. I am close to just giving up... but through... (22 replies)


Associated Tags: cpeo, droopy eyes, irregular heartbeat, ptosis

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