Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Welcolme Val! I'm 25 years old. Like I said before, I haven't been officially diagnosed. But my Dad and his 4 brothers all have. I've had 2 serious falls that caused contusions/abrasions and left scars on the top of my ankles. I fall or lose my balance often, but those 2 called for trips to the ER. I've learned what shoes not to wear, take my time, & scope out the terrain. I have hands that fall asleep, high arches, drop foot, stork legs, wacky body temperature, hammer toes, cramps in the arches & legs, fatigue. Right now, my husband and I are going through " pre-conception counseling " . We are trying to learn more about CMT (Type X2). My biggest fear is falling while I'm pregnant and having a miscarriage. My 2nd biggest fear is having a son w/ CMT. The GYN already told us we should really hope for a girl because at least she'll only be a carrier like me and not show as many signs. I also fear dropping our baby, since I drop stuff all the time as it is. I worry about it every time I hold my 5 mo. old nephew. I completely understand your depression too. I've been there myself. But I also see my Dad struggle w/ CMT every day. Yet, he stays positive because he says that there is always someone else out there worse off than him, so he's thankful for what he can still do. That's the same attitude I try to have because I know if he can do it, I can too! I think the best thing you can do for yourself, your family, and friends is educate them about CMT. There are great websites, books, etc. out there. Coming to this site was a step in the right direction! Everyone here is supportive and full of great info.! A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 welcome Val. you have found the right place to be. All of us in this group can understand what you are dealing with. I have a neighbor who " can't deal with my disability " like he has to deal with it, he is 81 and plays tennis daily and jogs sao he can't undersand a younger person having to use a cane. As for my family they all apoligized for the years of teasing and name callings they dished out to me before they found out I had a reason to fall down and be clumsy. hang in there and keep reading. Cathleen in Arkansas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Welcome Val, You will find this to be a wonderful group on people who truly know what you are going thru. My family found this site not too long ago and we have learnt more for our 14 yr old son's CMT from this group than any other resource including the 3 major doctors he see's. There are many organizations out there to help including MDA. Try and get in contact with them so they can guide you to a list of good doctors familiar with CMT. Good luck and welcome. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2004 Report Share Posted June 4, 2004 Welcome Val, glad to have you as a part of our CMT family here. Look forward to more information as you get more and more familiar with . Again, welcome. :-) Quote Link to comment Share on other sites More sharing options...
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