UnicornIsis Posted July 19, 2004 Report Share Posted July 19, 2004 Okay at the DYNA Summer Chill Dr. Grubb said in his lecture that most of the community are now agreeing that the hypermobility we have (at least those of us that are kids with this, I don't know about the adults) isn't really considered a form of EDS anymore, since they've re-worked the categories of Ehlers-Danlos Syndrome. They're now trying to all call it JHS--Joint Hypermobility Syndrome. Well, my parents and I were talking while at the Chill and many of us kids get the shakes or tremors or muscle spasms, whatever you want to call it, but they're NOT actually seizures for most of us. We ended up describing it more as full body muscle spasms and that is basically the way my doctor described it too. So we've decided to call the shakes I get, which happen to just parts of me and to my whole body at different times, FBS--Full Body Spasms. What do y'all think of that name?We noticed at the Chill from Dr. Grubb asking us to raise our hands about who had EDS/JHS and from talking among ourselves about this later, that most of us have EDS/JHS, FBS--the shakes/spasms/tremors, and most of us are ADD or ADHD too, I'm ADHD. Does this relate to anybody else out there for a majority I'm wondering. Would those that respond mind putting which, if any, of these that they have and what type of dysautonomia they have. Most of us at the Chill had NCS or POTS, I have both. Thanks, y'all. I'm wondering how this will turn out and if it turns out the way I think it will I'm going to talk to my doctor about the results. Quote Link to comment Share on other sites More sharing options...
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