Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Hi again all, just wondering, I got some feedback from my sons physio today. She said that she thinks that what she initially thought was hypotonia and ataxia, probably isnt, which is good news for us. But she thinks that he may have some type of muscle problem, where by his muscles have no endurance, i.e. they wear out of energy very quickly, and possibly for some reaon arent recharging correctly soon enough, sort of like what they think I may have (myasthenia gravis) which is a neuromuscular transmition disorder, it means that the little transmitters that tell my muslces that they have more energy are faulty, so that when I use that energy up they arent gettign the messge that theres more energy needed to be sent, I guess very similar in a way to mito??? ANyway they are not sure if htats what I have anyway let alone him having htat also, as he shouldnt as if it was congenital then I would have had it all my life also, and he is too young for it to be like mine (late onset), also they are still debating me also, as I am proving negative for the tests so far, indicating that it may be something else!!! (phew) also there some speculation that I may have MS instead or as well as. So to get to the quesitons!!!! do any of your children also have similar muscle problems, where thier muscles run out of energy with repitition??? he also gets one sided ptosis when tired and his joints " pop " when he is lifted up, his arms pop and when chaning his nappy his hips pop also. Thanks Cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Cindy, it does sound alot like mito-but could be million other things. If yours is MS how do they explain his problem? I think alot of people with mito are diagnsoed with MS and chronic fatigue syndrome before even ever hearing of mito. Mito can affect any organ or muscle in the body. It can cause great weakness. It can also cause ptosis. Have they thought of the idea that you may both have mito? It would explain you presenting " late onset " and him presetning so young. Just a thought. I would check out the www.umdf.org website and do some reading.If it sound familiar then I would mention it to you doc. Good luck, You've come to the right place for help and info. These people are so knowledgeable! Good luck, Dawn Quote Link to comment Share on other sites More sharing options...
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