Guest guest Posted May 14, 2005 Report Share Posted May 14, 2005 Hi Sue! It is nice to meet you! I have done a lot of internet research and I think I am going to pursue help through the Muscular Dystrophy Association as they have a lot of information on their website and I am sure they will be able to set me in the right direction to find a doctor that specializes or at least has knowledge of this. I used to go to a children's hospital but I am too old for that now, so it is not that easy. I need to be more creative!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2005 Report Share Posted May 15, 2005 I go to the MDA every 6 months, they have a wonderful Neurologist here in Oklahoma City. They recently ran my DNA test for CMT 1A which was negative. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2005 Report Share Posted May 15, 2005 , I am 38 and have had CMT since age 12 maybe earlier but not known for sure. I have been a part of the MDA since I was 12 yrs old. I really get a lot of support from them. They really do help a lot. They will also help you pay for AFOs if you need them. I really enjoy the MDA people here in Ohio. If you need anything else just im me. Sue Ford (another Sue in the group) Quote Link to comment Share on other sites More sharing options...
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