Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 I had genetic testing 2-3 years ago. There were no matches for any known CMT, Friedrich's ataxia or spinocerrabelar (sp.?) ataxia genes or sequences. I carried a Friedrich's diagnosis for many years. I know there have been new genes found since then. My MDA neurologist feels I should wait until several new gene tests are available to get re-tested, due to cost. Clinically, it appears clear I have CMT. This not knowing has been frustrating for me, especially now a nephew, 19, is showing some signs of CMT. He has no insurance and is skeptical of getting testing for fear of never being able to get insurance. So far, my daughter, 16, shows no signs. She's another reason I wanted to know. I do know the frustration, Elinor. Jim Quote Link to comment Share on other sites More sharing options...
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