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my doc was thinking of checking me for mito disease based mainly on the gastroparesis finding/nausea/swallowing difficulties with me. do you think this is a good enough reason for them to check me for mito disease? i see a geneticist here in two weeks for potential testing for mito and definite testing for EDS and marfan (potentially could run in the family)....

......a muscle biopsy to diagnose mito, to an extent, is a big deal, so i dont want them to do the test unless there is a high suspicion of mito disease................

should there be multiple findings/symptoms for mito disease and not just a finding of gastroparesis with nausea/swallowing difficulty to run this test?


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i can only comment that - having done extensive reading on mito disease & gastroparesis/ gastrointestinal dysmotilities as well as having many conversations with folks (including top specialists in the fields) about both, i've never heard of mito disease being the case solely based on GI issues. i'm sure there is an exception out there somewhere, but it certainly would be more than unusual.

the fact that a mito diagnosis won't necessarily bring a lot of additional answers is also something to consider. a biopsy isn't the most invasive thing out there but it's not the least invasive either. there are also a lot of other tests that can be done to see if mito seems to be indicated before a biopsy is embarked upon. this info is detailed on the site pat posted above.

obviously it's a decision for you and your doc(s) to make, but hope this additional info helps as you're thinking it through.

:) melissa

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