Interesting.. No real answers yet.. things really seem to wax and wane.. with some progressiveness as well.. What are they saying will happen - from what I've reasearched many people with mito do pretty well.. especially adult onset.. My sibling is having very similar symptoms as me now.. though they were diagnosed with crohns... they are thinking the rest of the symptoms are due to malnutrition.. I started with GI issues and IVIG helped them, as they would help crohns.. but I have definite tongue changes, so not sure how that works into it alll.. Did they do the muscle biopsy? I'm thinking about asking for one.. they just have you on vitamins for now?? Thinking about you and your family!! So are the EMG's normally "normal" with mito dz?