Thank you Kitt. Actually this is what I think is most likely, and of course I hope it is something else, so I want to try what I can.
I have a question just for you. Why do some websites, like Mayo, say that CMT rarely causes pain? If small fiber neuropathy causes severe pain, and CMT causes serious small fiber neuropathy, why would CMT patients not have pain? Many websites do say it can cause serious pain, but the ones that don't really anger me. My neurologist, who had praised my pain tolerance through a 2 hour EMG/NCS ( much of which I barely felt ) decided once it was CMT that it shouldn't hurt very much. That's just the SFN component. My foot, ankle, leg, hand, and wrist muscles are visibly wasted. My legs have the dead weight and stiffness of cement. I can barely go up steps. How can this not create pain?
The gabapentin had been controlling the burning until now. The oxycodone the shooting leg pains and other muscle pain. I was really getting by okay, in spite of increasing weakness. That was just the way it is and i was okay with it. This is a whole new ball game and I don't want to play if I don't have to.