Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Hi Steve, I'm 52 and have known for about 20 years I had what my father, grandfather had, but didn't know until 10 years ago that it was CMT. My grandfather was told he had arthritis and father was told a type of hereiditary neuropathy. I was on Neurontin for the pins and needles in feet for several years, then when my hands started being affected it did not help, Dr. put me on Lyrica and it helped wonderfully. I too just want to always keep feet and legs busy, especially at night. Dr. put me on Tisadine(sp) at bedtime for that. First 4 hours sleep very well and then sometimes wake up. I personally would much rather have no feeling, than pins and needles or feeling that I have socks on when I don't. All of us has different experiences and we need to keep on the Dr. until we get the meds and/or service we need. I have a great group of Drs., from neuro. to pulmonary. I have about 7 Drs. in all for various reasons...........and they all listen and keep each other in the loop. Steve, keep pushing the Dr. until you get the service you deserve or move on to another. Not all Drs. know much about CMT, and if they are not willing to learn you do not want them on your team. Originally my Pulmonary Dr. did not know that much........so I took in article from this site and he went home on his own time and read and got on computer and researched and next visit he was up on CMT. My diagram/phenric nerve is pushed up in my left lung so I have 30% loss of lung capacity. Sorry for length, but had lots to say. Connie P'burg, OH Quote Link to comment Share on other sites More sharing options...
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