Guest guest Posted March 11, 2009 Report Share Posted March 11, 2009 Thank you all for reminding me that I am not alone, it really is one of the biggest things that keeps me going. I have started " care notebooks " for myself and each of my children with info on CMT and all out test results and medical info. It really has helped. I'll let you all know how we fair at Children's. I am really hoping they come to some conclusion about bracing for my daughter as well as what we should do for my son who is just starting to show symptoms and has had DNA confirmation of the disease. His pediatrican just wants to take a wait and see approach at this time and I am hoping there is something we can start doing to help him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 , That's great to hear that your doctor took the time to do the research. My primary doctor does the same and all the " top CMT specialist " will do very little and often so negative that they will not take the time to get to know you as an individual. Andy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Hi , What a doctor!!...His way of approaching the fact that he didn´t know about CMT and your son needed to know, is such a creative and also human simple approach. More of this and we will do better in all. Anne in Denmark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 I was young but doctors said it was growing pains. My mom had it very young too and her mother worked in a hospital and had her to top drs and nobody knew what it was. I found out when my sons dr refered him to the mda docs. Then we got very little knowlege, help because we were on state medicaid. Between me/my son in iowa and my sis/her son in cali for a 25 years time period we were diagnosed with cmt1a and cmt1x. Mda didn't want to help with dna testing either. I had to threaten law suit to get a dna test and now am waiting for the doc to ask athena to check for the other since the one was negative. I quit. Think ill go to the mall during the telethon and broadcast how mda begs for money and dont help people so they can have fancy offices instead. Plus they never educated us on what our bodies need to fight this CMT. They have known vitamin C makes myelin for a long time and other stuff to. Poor people are just as important as anyone else and its time we stand up. My mom had to die young because she was unaware that all the meds she was prescribed were killing her. I dedicated my adult life taking care of my handicapped son, mom and dad and I was handicapped myself. I made myself do it because someone had to do it and now I attempt to get services for myself and they act like it will be coming out of their own pockets..I'm glad ol Arnold Swatznager cut state workers pay in cali. Wish theyd do that all over. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2009 Report Share Posted March 14, 2009 , my son had CMT since birth. He had it bad. He didn't walk until he was 2 and then not very far. I carried him on my shoulders everywhere because having CMT myself my arms would give out so I had to compensate. Please make sure you and yours get the best diet possible. Do research. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2009 Report Share Posted March 14, 2009 , Bless your heart ......you sound like a wonderful mom! How are you and your son doing with your CMT now? Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2009 Report Share Posted March 14, 2009 Hello , I was wondering what type of CMT you and your son have. I was told I had CMT type 2 but now they aren't sure. Most in my family had CMT very young and some had it like your son and couldn't walk when young but did allot crawling or scooting on their behinds. I also have trouble with my hands among other things. Thanks Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2009 Report Share Posted March 14, 2009 Hi Geri, I'm not sure what type we have. I tested negative for the 1A so maybe 1X. I am so tired of having my states money going to mda for me to go on a bus for 2 hours, sitting all day to see the doc for 10 min and find out nothing more than I found out 25 years ago. It's really bogus. It just isn't worth my time and effort. Makes me wonder where all the money goes. I use to take my son and I faithfully when he was growing up and all they can tell me is they lost our records. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2009 Report Share Posted March 14, 2009 Thank you Geri. My son is bad. He uses an electric wheel chair, has lymphadema, I assume from not moving much and very poor diet. He never would listen to me about nutrition. I am still able to walk and care for myself pretty good. I do use a wheel chair for long distances though. My 13 year old daughter keeps me going. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2009 Report Share Posted March 15, 2009 My family all has 2A2 and mostly late onset. > > Hello , > > I was wondering what type of CMT you and your son have. I was told I had CMT type 2 but now they aren't sure. Most in my family had CMT very young and some had it like your son and couldn't walk when young but did allot crawling or scooting on their behinds. I also have trouble with my hands among other things. > > Thanks > Geri > Quote Link to comment Share on other sites More sharing options...
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