Guest guest Posted July 3, 2003 Report Share Posted July 3, 2003 Welcome Elaine...I am fairly new at this site also. I do enjoy reading everyone's posts. I was supposed to get my AFOs today but they called and had to cancel and with the holiday weekend I wont get them now until next wed. I don't know much about my CMT other than I have had 3 Drs. tell me that they are sure I have it and my insurance wont pay for a DNA test. So many women in my family have it but I am the worse. My hands are now numb the feet have been numb for 14 years. I am taking Neurontin and Lexapro and quinine for the leg cramps. in Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2003 Report Share Posted July 3, 2003 Welcome Elaine and thank you for introducing yourself to the group. I too am a gardener 'of sorts'. Our poll on CMT and disability is still open, so if you like, please give it a few minutes of your time. Here's the direct link, /polls then just click on the current poll. Former polls are also available to see topics and responses. Good luck with getting a scooter. ~Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Hi Elaine, I was diagnosed a year ago with CMT Type 2. Can you tell me what made your doctor say you had Type 2? Thanks, Fred Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Hi Elaine, I'm going to be 45 this month and also have CMT1A, the funny thing I saw in your message is I also was in volleyball (even broke my leg in 7th grade doing it), was in the band in high school, also in the rifle squad (even won the best in my squad and we marched in Niagra Falls) and also have very high arches, which I thought were kind of sexy years ago, never knowing what it was going to mean down the road. And the hammertoes..I've been having trouble for years, but just recently figure out what I had. It's great talking to others and it helps and relieves the stress. I just started going to a specialist who I think is great. Even dropped her off a thank you card yesterday just for caring like she has been. Getting the right doctor is key, I learned the hard way. Take care, Please visit our current poll: What is the impact of CMT on your financial life? /polls Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Thank you for the welcome, It sounds like you have an amazing child. I can't imagine what it must be like for him. When I was a child I don't think many doctors in my area knew about it because none of the family doctors we had ever said anything about seeing a specialist. My doctors put it off as growing pangs and blamed it on the fact that I grew so big so fast. I was almost 6 feet tall by the time I entered jr. high school. I wish the best for you and your family. Thanks for the kind words. Elaine. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Welcome Elaine, You have come to the right place for all that you need to know. My son, who is now 15, was diagnosed in 2001, just this past November his new neurologist tested not only him but me also (I carry it from my side of the family). He told me what I had CMT and have classic signs in my feet and hands, but no where near as bad as our son. I look up to him as my hero for going thru not only dealing with CMT but being a teenager and peer pressure. If he can get thru this so can you and I. Keep your chin up and welcome. Quote Link to comment Share on other sites More sharing options...
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