Guest guest Posted May 19, 2009 Report Share Posted May 19, 2009 Hi everyone… Does anyone out there have experience with a proximal form of CMT? Our son Gavin now has muscle wasting in the shoulders, mostly across the shoulder blades…he has daily back pain, we think in part due to tight hamstrings and difficulty holding his upper back straight (we're doing lots of exercises for this). The doctors have said that he seems weaker overall than is typical of 1A but he has less foot deformity. I've found some research articles about rare proximal forms of CMT 1A, but these seem to be associated with less distal weakening than he has. It's a puzzle. We're about to take him down to the Wayne State clinic for an opinion. Thanks Sally Quote Link to comment Share on other sites More sharing options...
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