Guest guest Posted November 4, 1999 Report Share Posted November 4, 1999 , I'm happy to hear that the bio[sy came back normal, and while I hate to rain on your parade, I think there is something else that you should know... sometimes the results can come back normal, but a mito disorder can still be present. HOW? you ask, Well, good question. Partially, it depends on the type of biopsy done. Was it fresh or frozen. Was it skin or muscle? Also, keep in mind that there are many types of mitochondrial disorders that haven't even really been " discovered " yet, if that makes sense. So the lab/researchers can only say he has a KNOWN mito disorder; it's possible that he does have some type of metabolic/mito problem that doesn't quite have a name yet. That's where we are with Lexi. Now, this is not to say that the docs aren't 100% correct and that there is no mito problem. All I'm saying is that experience has taught me to take the advice of all people (doctors, therapists, even my husband) with a grain of salt. Compare what they say with what you know to be true. Are there areas that don't fit, or don't make sense? If so, then you probably don't have all the answers. then you need to figure out if you NEED all the answers. Am I rambiling too much?? Sorry if so. If you boy was in & out of the hospital for the 1st two years of his life, that's not " nothing " . You could tell people who ask that you are still looking for answers. I've had to really adjust my way of thinking to realize that most people (myself formerly included) want it all wrapped up in a tidy package. here's your problem; here's your diagnosis; here's your treatment--problem solved. Sort of like going through a hosptial " drive-through window " if you will. But so often, Lexi just never fit into a tidy little package. So I've started using little phrases like " she's doing great today " or " we're still looking for information " when people ask how she's doing, because it's too complicated to go into a long explanation of something I'm not entirely sure I always understand. Anyway, even if mito problems are ruled out, I'd encourage you to stay on this list. You'll find a tremendously supportive, informative, and understanding group of people from (literally) all over the world. Hope to keep hearing from you! ruth Quote Link to comment Share on other sites More sharing options...
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