Guest guest Posted May 24, 2006 Report Share Posted May 24, 2006 Last month I went to UVA to " get a second opinion " because they have a MDA clinic there. Well to try to make my long story short the neurologist said that he suspects I could have HNPP or CMT1A with a leaning more towards HNPP.Well I have looked extensively on line about both of these diseases and I still ahve some questions. Can I have HNPP and have the very obvious CMT feet- extremely high arches and hammer toes? And also have the " skinny " lower legs and arms? Can I have CMT1A and have numbness that comes and goes? Like being numb in areas for weeks to months and then having the numbness fade. I have a ways had this but it has gotten progressivly worse over the years. Like right now I am pretty numb from my knees down almost all over but some areas are worse than others. I have spotty numbness on my lower arms. The numbness that is throwing me for a loop in my buttox are numb (they went numb about 1 1/2 months ago) and my lest shoulder is numb. I know from waht I read that with CMT you don't typically get the numbness in these areas, but I also know that there is no set standard for CMT. I hope that these questions make sense and arent too rambly. I look forward to any insight that any of ya have to offer. Thanks, Bree-Anne P.S. I have the opportunity to get genetic testing done to determine which it is. Do you think it is necessary? What would you do? There is a possibility that I could be holding the bill for it when it is done? Quote Link to comment Share on other sites More sharing options...
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