Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 , When I was younger my family believed (and I suppose some DR along the way told someone this) that it was generation " skipping " ...I had nothing to worry about since my mother had it...here I am 28 years later dealing with it every day and wondering if my daughter will have it as well. This is my first post BTW (been lurking for a few weeks ), please bear with me here. I was tested at 19 because my sister demanded it...My doctor said he was sure I had it but was unable to prove it with his testing. I went to a clinic at MDA and was officially diagnosed. This really explained why I was so slow at running when our gym teacher in HS had us running track...she just thought I was lazy..used to tell me that with my legs being as long as they are I should " fly " ...not good on the self-esteem. My sister though did get all of her children tested and all came back negative. Thank God! Now I just have to get my child tested (she's 3)and I'm terrified. Anyways, just wanted to let you know that I too had heard something about the generation skipping as well. Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2004 Report Share Posted June 4, 2004 Teri, Isn't it amazing what DR's told us or our families yrs. ago? When you were diagnosed, what type of CMT did they say you have (if you don't mind me prying)? I completely understand your being terrified for your daughter. I know my hubby & I have our worries... & we aren't even pregnant yet! CMT is something in the back of your mind though. I know w/ X2, if I have a boy he could show minimal signs or he could show worse than any one in my family. If I have a girl, she'll be a " carrier " like me & show minimal signs. Do you see any symptoms in your daughter yet? Three is still young probably. My parents started seeing it in me around 1st-2nd grade. I started walking @ 8 mos. old, which my Mom said was too early. She said my legs looked too small to carry my body. So you'd think w/ walking so early, I would've been a good athlete or runner. Guess I missed that boat. =) Yup, I can recall in HS the Volleyball coach who couldn't understand why I wasn't able to run the bleechers or a mile around the track every day @ practice. The whole point of why I played V-ball was because you didn't have to run very far in a 60x30' court! If I wanted lots of running, I would've done Field Hockey or Track! I understand what you mean about the self-esteem. As if dealing w/ the normal teenage growing pains wasn't hard enough, then to be told that you're lazy or aren't trying hard enough. I'm glad you made your 1st post! I'm still " coming out " myself (after much lurking). I'm just happy that everyone here is so understanding & full of info. =) A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2004 Report Share Posted June 4, 2004 , They didn't say what type I have & I haven't been back since I got my AFOs...I should be going on a regular basis but I have been in a sort of denial for the past 9 years. Finally decided here recently that if I am going to be able to stand up when my daughter walks down the aisle, I need to care a lot more. My hands are bad, can't button shirts (but is -my daughter- can, she helps a lot) and if I don't wear my AFOs, I spend half the day crawling back up into the standing position... I actually had a chiropractor (sp?) tell me once that I really need to watch my weight so as to not put anymore stress on my body. Never mind the fact that at the time I was a borderline anorexic at 5'10 " and 112 lbs.......Isn't it funny the advice you get sometimes from people with absolutely no knowledge? is fortunately has no symptoms, flat footed, and full of energy like any other 3 year old. Her cousin has duchennes so that tends to keep my problems in perspective. I love this group...you guys have really helped me bring myself more up to date with everything..I started vitamin C today! Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Teri, Keep your chin up! It sounds like is is your motivation to keep going & that's a wonderful reason! I hope she continues to grow up happy & healthy! Congrats on the Vit. C. I take a little, but not really for CMT. More so just to ward off colds, etc. But just from what I've been reading here, it sounds like it works! I hope it does for your too! I was wondering, did you have any problems when you were pregnant w/ is? As far as balance/falling? My Mom is so worried that when I'm pregnant, I'll fall/miscarry. I never worried about it, until she told me she was worried! I told her I'll just have to take my time even more than I do now. =) A. Quote Link to comment Share on other sites More sharing options...
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