This is really interesting to me … I fit the clinical “mito” picture pretty well too. Well enough that I have had the full “official” workup including muscle biopsy (ouch!!) and all the scans/tests/bloodwork/etc that you can imagine. The official mito docs decided that I didn’t have a classical mitochondrial disease in the end, and my muscle biopsy was reported normal.
That was before I had the EDS/MCAS/Dysautonomia diagnoses, and apropriate meds/treatment for those three has helped quite a bit so I am thinking my current diagnoses are likely to be correct. It says a lot about how our cases can present though, that we’re getting worked up for mito!