I think about you lots.. how are you?? I have been declining recently.. Afraid I need Bipap at night now.. my right leg isn't working right either.. nor my pinky fingers.. .. no one knows why at this point
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?
So what are they saying they think you have?? I have had nystagmus as well.. sometimes i actually see it in my vision.. when my symptoms are exacerbated my lips vibrate - like I'm humming on a balloon.. all my muscles vibrate and shake - small shakes.. with big twitches too.. no cramping though.. Was your emg completely clean? How are the vitamins going? hows your breathing? what did this neuro tell you??
whats going on?? Did they do a biopsy? I wish I could private message you! How are all of your symptoms? how are you handling it all? I am doing alright.. I have a lot of burning paresthesia symptoms right now - when I get exposed to sun it exacerbates it.. and I am really worried I need Bipap at night.. I am waking up with chest pain - feels like fluid in my lungs and headaches.. I'm afraid I am not breathing deeply enough at night.. How is your breathing at night? Do you have GI symptoms, i cant' remember?