Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 I think of myopathies as muscle diseases. It can be in the nerves as well but it's not in the Central Nervous System (spine, brain). My son has muscular weakness and fatigue (somewhat worse on the right side) but it's not CNS related (at least from what they can tell). I thought he had poor coordination b/c he falls a lot but I've been told that he falls b/c of weakness and absent reflexes and that actually his coordination is okay. Does that help? Anne R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 I think of myopathies as muscle diseases. It can be in the nerves as well but it's not in the Central Nervous System (spine, brain). My son has muscular weakness and fatigue (somewhat worse on the right side) but it's not CNS related (at least from what they can tell). I thought he had poor coordination b/c he falls a lot but I've been told that he falls b/c of weakness and absent reflexes and that actually his coordination is okay. Does that help? Anne R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 AReckling@... wrote: I think of myopathies as muscle diseases. It can be in the nerves as well but it's not in the Central Nervous System (spine, brain). My son has muscular weakness and fatigue (somewhat worse on the right side) but it's not CNS related (at least from what they can tell). I thought he had poor coordination b/c he falls a lot but I've been told that he falls b/c of weakness and absent reflexes and that actually his coordination is okay. Does that help? Yes, it does. So - at least in your son's case, his symptoms are pretty much the same all the time? I mean, it probably gets worse if he uses those muscles a lot - but you probably see the effects right away, too? But in general, it's about the same all the time, and the same reactions to exercise all the time? Lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 AReckling@... wrote: I think of myopathies as muscle diseases. It can be in the nerves as well but it's not in the Central Nervous System (spine, brain). My son has muscular weakness and fatigue (somewhat worse on the right side) but it's not CNS related (at least from what they can tell). I thought he had poor coordination b/c he falls a lot but I've been told that he falls b/c of weakness and absent reflexes and that actually his coordination is okay. Does that help? Yes, it does. So - at least in your son's case, his symptoms are pretty much the same all the time? I mean, it probably gets worse if he uses those muscles a lot - but you probably see the effects right away, too? But in general, it's about the same all the time, and the same reactions to exercise all the time? Lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2004 Report Share Posted January 20, 2004 Lynne, I'd have to say that the muscle issues are usually the same, although, at times, they've seemed to get progressively worse (although at a steady even pace) b/c he also has had very serious problems with his appetite and lack of weight gain. That seems to be sporadic - and is very scary as he lost weight this year and almost had to be on a g-tube. He's had sensory integration issues as well, but most of those have resolved except those related to feeding. He really doesn't seem to have much interest in eating and that changes over time. But, yes, the muscle issues seem to remain fairly constant. Annr R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 " That seems to be sporadic - and is very scary as he lost weight this year and almost had to be on a g-tube. He's had sensory integration issues as well, but most of those have resolved except those related to feeding. He really doesn't seem to have much interest in eating and that changes over time." I'm just wondering if other parents have these issues with feeding and their kids with Mito? We've had severe issues with eating,sensory issues,etc.... until recently, and I think we can attribute his appetite change to the Pulmicort(steroid) he is getting for his asthma, but I've even tried soda with caffeine , in hopes that the caffeine would increase his appetite. thanks ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 Actually, caffeine suppresses the appetite. It's used in some over-the-counter diet pills for that reason. Lynne wrote: ....... I've even tried soda with caffeine , in hopes that the caffeine would increase his appetite. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 Actually, caffeine suppresses the appetite. It's used in some over-the-counter diet pills for that reason. Lynne wrote: ....... I've even tried soda with caffeine , in hopes that the caffeine would increase his appetite. Quote Link to comment Share on other sites More sharing options...
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