Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 , I know this is overwhelming right now. I am a and was diagnosed in 1995 with mitochondrial cytopathy, COX deficiency and possible other respiratory chain deficiencies (I am sure this doesn't make much sense to you right now). I was lucky and it only took me 4 years to get a diagnosis. Welcome to the group. These people on this site are truly a family to all who come and are very knowledgeable. Never be afraid to ask questions, as usually someone will have an answer or suggestion! Smiles, a > Okay, I hope I sent this to the right place. I am new to the list. I was just > Dx'd with mitochondrial myopathy. my Dr from university of Michigan called me > March 29 and said my ischemic exercise test showed that I don't metabolize fat > properly. let me start from the beginning. four years ago I was dx'd as > myasthenia gravis even though no test confirmed this. the didn't do a emg, > just blood work which was neg. I was put on mestinon and seemed to respond > well to it. my symptoms where not gone, but lessened. I was considered (mild). > in Aug '03 i started having increased muscle fatigue, difficulty breathing, > and swallowing. After going back to my neuro, he finally said (with a little > pushing) that I should go to U of M for further testing as maybe I didn't have > MG. So in Jan '04 I got to go (don't you love HMO's?), I had a emg that day > which ruled out MG and suggested some mild abnormality with my muscles. I had > blood work, went back in Feb for muscle biopsy. T his should some > abnormalities but not enough o confirm Dx. They suspected mito because I also > have degenerating retinas which the local retinal specialist did not know > causes of, and hearing loss in right ear. Dr put me on mito cocktail even > before the test all came back, he upped by coQ10 after test came back to 200 > mg 3x a day. I am a physical therapist assistant. I do out patient therapy, > primarily back and neck pain, manual tech are my specialty. I have lots of > questions and don't know where to start. any help will be appreciated. this is > long so will write more later. in Michigan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 , Hello, I also am diagnosed with COX defeciency, mitochondrial cytopathy. I was diagnosed in two years but I am a nurse , so I can be very aggressive with the doctors and I also have them at my disposal where I work. Welcome to the group. Betsy Welcome to the group , I know this is overwhelming right now. I am a and was diagnosed in 1995 with mitochondrial cytopathy, COX deficiency and possible other respiratory chain deficiencies (I am sure this doesn't make much sense to you right now). I was lucky and it only took me 4 years to get a diagnosis. Welcome to the group. These people on this site are truly a family to all who come and are very knowledgeable. Never be afraid to ask questions, as usually someone will have an answer or suggestion! Smiles, a > Okay, I hope I sent this to the right place. I am new to the list. I was just > Dx'd with mitochondrial myopathy. my Dr from university of Michigan called me > March 29 and said my ischemic exercise test showed that I don't metabolize fat > properly. let me start from the beginning. four years ago I was dx'd as > myasthenia gravis even though no test confirmed this. the didn't do a emg, > just blood work which was neg. I was put on mestinon and seemed to respond > well to it. my symptoms where not gone, but lessened. I was considered (mild). > in Aug '03 i started having increased muscle fatigue, difficulty breathing, > and swallowing. After going back to my neuro, he finally said (with a little > pushing) that I should go to U of M for further testing as maybe I didn't have > MG. So in Jan '04 I got to go (don't you love HMO's?), I had a emg that day > which ruled out MG and suggested some mild abnormality with my muscles. I had > blood work, went back in Feb for muscle biopsy. T his should some > abnormalities but not enough o confirm Dx. They suspected mito because I also > have degenerating retinas which the local retinal specialist did not know > causes of, and hearing loss in right ear. Dr put me on mito cocktail even > before the test all came back, he upped by coQ10 after test came back to 200 > mg 3x a day. I am a physical therapist assistant. I do out patient therapy, > primarily back and neck pain, manual tech are my specialty. I have lots of > questions and don't know where to start. any help will be appreciated. this is > long so will write more later. in Michigan > Quote Link to comment Share on other sites More sharing options...
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