Guest guest Posted September 30, 2004 Report Share Posted September 30, 2004 Just keep reading the post, you will learn a lot at this site. I have a 21 yr old son just dx this past March, type 1 don't know my type, but I know it stinks. We both have same symptoms with hands numb and hurting, clumsy, bad knee joint, elbow joint, burning in the foot and leg, shall I go on? Keep him encouraged, he is young and will learn to overcome a lot of things, I hold an inactive real estate license in Ms. Feel free to email on the side if you wish. cvance@... Gene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2004 Report Share Posted September 30, 2004 Tough to hear all the bad news you've come accross lately. No one expects anything like CMT until it happens. It is not the end of the world. Your son may not be able to do everything you hoped, but he will do what he can and that will enough. This is not going to be easy for you, but your family is now going to lean on you even more than before. My hunch is that you are very much up to this challenge. Cheers, Jack Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2005 Report Share Posted July 20, 2005 Hi Mike, I can understand your concern. But I would caution you not too draw too many quick conclusions. I had nerve and muscle biospy when I was 11. I also had a spinal tap... but I think that might be different from a lumbar puncture - not sure. This confirmed CMT but they did not have much for " types " at that time. In any case, let your daughter mold her future and remember that the medical profession does not have all the answers. I just posted a long reply as to how my condition went from walking to a wheelchair and back to walking again. As Gretchen mentioned this disease is not one that you want to make predictions on what the future will hold. Given the right options your daughter will flourish in whatever she chooses. There is always a way. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2005 Report Share Posted July 20, 2005 Hi Mike, Everyone in my family had symptoms since babyhood. The men in our family seem to be more effected than the women. My recommendation is as little interference as possible in her life. I am now 60 years old have some trouble with gait and my hands and lower arms. Practically speaking it makes little difference in my life, everything I do seems to take more time and effort. I now walk with an AFO on only one foot and with a cane if I am going to be on my feet for a long time. The men in our family who have had problems have had early surgery on their feet and legs. I feel their problems are more related to poor results from the surgery in combination with CMT. I don't know what a lumbar puncture will prove. A muscle biopsy would show - but have you thought about waiting for a couple of years for more tests? The research has progressed ALOT in the past few years! Please tell your daughter that many of us have never had reflexes and have had a hard time running. Perhaps I could put you in touch with my daughter who is now 34 years old and has been diagnosed since she was a toddler. Don't get discouraged. Yes, we would all prefer that we didn't have CMT, but we learn to enjoy life even with it! Incidentally, does anyone else in your family have it of similair symptoms? Penny Quote Link to comment Share on other sites More sharing options...
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