Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell.
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10 months ago
My husband was diagnosed with merrf two years ago..I can tell it is progressing, he is losing strength, he can barely stay awake at times, He has lost all but a sister due to merrf, his sister has a tracheotomy and on a vent..she has respiratory failure. I so hate this disease and want our lives back.
11 months ago
Hi, I was diagnosed with Mitochondria Myopathy 10 days ago. My neurologist has no experience in this field. I live near Chicago. Does anyone know of a neurologist in Midwest who specializes and has EXPERIENCE in adult mitochondria disease? Thank you so much for your assistance.
11 months ago
It has been newly suggested that I might have Mito due to my past and present medical conditions. Presently, having Autonomic dysfunctions with labile BP and heart rates. I also have intestinal issues, GERD and endocrine thyroid issues too. Have it all! Typical 3 organ problems. IF anyone has autonomic issues, anything work better than other things to get this under control? Thank you
Mr W Monington said...
over 2 years ago
My wife suffers from this terrible disease for which there appears to be no cure at present, I want to make her life as comfortable as possible. She suffers greatly from stomach bloating and stomach cramps. We are giving her Colpermin with little effect now there is a preparation called Bescopan, however because my wife suffers from Glaucoma bescopan is not advised. Can anyone suggest something that might alleviate the almost continuous symptoms, please? Mr W Monington
about 3 years ago
after years of testing and no one finding the right answer to me being so sick and in so much pain all the time they finally tested me for mito i came back opa positive after finding out that one or both my children could have it i decided to have them both tested my 9 yr old daughter came back negative but my 13 yr old son came back positive i was heart broken he has always had muscle and joint pain hard time sleeping always got sick so so easily but now we know what is wrong with us both my question is does anyone else like my son and i both have no urge to eat at all we are never hungry and im to the point where food even thinking about it makes me sick and if i do it i get very sick afterwards how do you tell your son he has to eat when you yourself cant and dont eat ?
over 3 years ago
Hello, My husband has been given the clinical diagnosis of mito disease, but all his testing came back negative (save a muscle biopsy) - so they don't have a name for it, but the neurologist at the Cleveland Clinic said that mito is the closest thing that fits with his symptoms. His current biggest health-related issue, besides only having so much energy per day, is that he has the worst chronic insomnia his doctors have ever seen! Have any of you seen this with mito? He only sleeps 2-3 nights per week. And sometimes he goes months without really having a good night's sleep at all! It's been really hard explaining to people why he cannot work when he doesn't know when he'll sleep and why he just "can't make himself fall asleep."
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