Guest guest Posted July 18, 2000 Report Share Posted July 18, 2000 Hi, Cathy ... I am so glad that I joined this group ... I am learning more and more each day. Cathy, you brought something to mind. Over the past year or so, I have been getting a little disoriented like you described ... kind of a dizzy feeling, a little bit out of whack, if you will. It didn't occur to me that it might be CMT related. Anyone else besides me and Cathy experiencing this? Also, I have another question. I had all the usual problems with falling, balance, etc., through the years, but no pain. The pain started in my feet about four years ago on an intermittent basis. The pain would usually go away after a good night's rest, but about a year ago they started to cramp and hurt in earnest. I was diagnosed about two months ago after I couldn't stand the pain anymore. Here is the question: How quickly have the rest of you progressed? I mean, if you are in braces or using canes, how long did it take to get there? I am 62 years young now, I have cramping and pain in the feet all the time, starting to get drop foot, hands are starting to cramp on an intermittent basis ... Can anyone tell me what to expect in the future based upon your experience? Thanks in advance for your replies ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2000 Report Share Posted July 18, 2000 Hi Gang Well I have tried the pot and it works pretty good for me regarding the pain but then again like Gretchen said if you have breathing problems like I have its not so good.guess your damned if you do and damned if you don't. Got a question....Do any of you get dizzy while sitting at a railroad crossing and watching the train go by? I know its a wierd question but I have to sit for a few seconds and get my eyes back in focus either that or not watch the train......my head just wants to go around in circles......hmmmmm could be something other than CMT too. This also happens at the fair if I watch the rides or in a parking lot watching cars go by I just get off center so to speak....anyone else? Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2000 Report Share Posted July 19, 2000 & Cathy, Hmmmm I just started with the dizziness. Going to go to the doctor tomorrow for check up on other things and was going to ask her about it. It has happened to me intermittently. Just sitting at the computer or laying on the couch. Never put it with the CMT and not thinking it is related. ....remember CMT varies from person to person but is a slow progression. I am 53 and was diagnosed 25 years ago. I had had some symptoms all of my life. I was put into one leg brace at that time. The other leg brace did not come until 8 years ago. 25 years ago, the thumb muscles had deteriorated to where my finger crossed over my thumb to help it compensate. My hands are drawing up into the claw like stage but still performing. I feel very strongly that surgeries sped up my progress. Confirmed by doctors. My sister too has CMT but not as badly as I do. She does not wear braces of any kind. So you see, it is slow progression and so individualized. from Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2000 Report Share Posted July 19, 2000 ... Thanks for the input ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2000 Report Share Posted July 19, 2000 ... Thanks for the input ... Quote Link to comment Share on other sites More sharing options...
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