roxie Posted February 21, 2007 Report Share Posted February 21, 2007 I see that a lot of ppl have posted about having mitocondrial disorders. I'm not sure if I have ever been tested, how do you know if you have mito disease?ThanxMadeline Quote Link to comment Share on other sites More sharing options...
Sunfish Posted February 22, 2007 Report Share Posted February 22, 2007 hi madeline -i wouldn't say that a LOT of people on the forum have mitochondrial disorders. there are only 2-3 people i know of with confirmed diagnoses and then several of us where it's suspected but not for certain.in short a muscle biopsy is the only definitive positive diagnosis, but it's not definitive for a negative. in other words if the result is positive the diagnosis is for sure but if the result is negative one could still have a mito disease.but there is a lot of additional testing that can be helpful/informative to a doc who knows what s/he is looking for. there is extensive info regarding testing & diagnosis at http://www.umdf.org (united mitochondrial disease foundation).additionally here are links to prior discussions on the site regarding mito diagnosis:http://dinet.ipbhost.com/index.php?showtop...811&hl=mitohttp://dinet.ipbhost.com/index.php?showtop...360&hl=mitohttp://dinet.ipbhost.com/index.php?showtop...219&hl=mitohope this helps, melissa Quote Link to comment Share on other sites More sharing options...
jlmahon Posted February 22, 2007 Report Share Posted February 22, 2007 Madeline, I have been diagnosed with mitochondrial cytopathy based on lab tests and muscle biopsy results. My lab tests showed I had elevated lactic acid levels, elevated CPK (muscle enzyme). Lactic acid is a byproduct of exercise, so it is expected right after doing something like aerobics, jogging, etc. I had a moderate level of lactic acid for no reason. My doctor then ordered a muscle biopsy which showed abnormalities consistent with mitochondrial disease. The links that Sunfish posted are really excellent sites. Do you think you have a mitochondrial disorder? Quote Link to comment Share on other sites More sharing options...
roxie Posted February 22, 2007 Author Report Share Posted February 22, 2007 HI Hanna! I don't think that I have a mitochondrial problem, but was more curious for seeing it discussed. I have a friend witha mitochondrial disorder but she doesn't like to talk about it, I though this might be a way to learn about it!ttylMadeline Quote Link to comment Share on other sites More sharing options...
ellepee Posted February 22, 2007 Report Share Posted February 22, 2007 Hi-I was diagnosed with a mitochondrial disease by a muslce biopsy. This is the only testing I had for it and I don't know too much about other testing, but I think before the muscle biopsy there are blood tests that can be done to check for elevated lactic acid levels or a special MRI with a spectroscopy. The United Mitochondrial Disease Foundation website that Melissa mentioned is great. It has tons of info for doctors on it too. Here is another good website: http://www.mitoaction.org/definition.html~Elle Quote Link to comment Share on other sites More sharing options...
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