Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 Hi , I know how you feel. I was diagnosed at 22, but saw symtoms at 16. Got AFOs at 23, but only wore them for long walks. By 30s I walked with a cane when I knew I would need balance (long walks or in crowded places) Then walked with a cane and AFOs all the time up to 40's. I am now 43 and use an electric scooter to get around where you have to be standing for a long time or walking around. I just got it a couple of months ago, so I am still adjusting to the change. It actually has been very liberating and I wonder why I took so long to get it. (scared, I guess) Each stage is scary, but remember, that you have adjusted great up to now. Having and raising 4 children is enough to make marathon runners tired! Please feel free to email me personally because I understand what you are going through. Where are you located? Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2005 Report Share Posted May 25, 2005 Welcome ! I have been taking Vitamin C more frequently and there are days when I do feel better. I have read a lot of posts about people taking C and having great results. Take Care, Elaina/NY PS. Hilton Head must be so beautiful this time of year! I'm a lighthouse fanatic and just love Hilton Head and Cape Hatteras. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Welcome , you will find this a great site and really helpful, fun people.. Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2005 Report Share Posted May 28, 2005 , Welcome to the group! Hope you learn alot as I have! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2005 Report Share Posted June 23, 2005 Hi , Welcome to the list!! I really admire you for admitting how you really feel. I think we have to be honest with ourselves so we can process everything and start to heal. I do not like to be told how I should feel about CMT. I am the way I am because of many different life events know what I mean?? This list has helped me to change many things about how I view CMT. Again welcome and thank you for your honesty. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2005 Report Share Posted June 29, 2005 Hi and welcome to the group. I hope you find this very positive and helpful. Take care, Elaine in Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2005 Report Share Posted July 8, 2005 Welcome welcome ! Elaina. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2005 Report Share Posted July 9, 2005 WELCOME NICOLE, Thank you for your introduction. I am Joana from London, have CMT type 1. I hope you would enjoy to be part of our group. It is so great to be able to share with each other and here we can learn a lot as well, believe me!!! Fell free if you want to email me. I wish you all the best and enjoy !!!!!! Take Care Joana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2005 Report Share Posted July 14, 2005 , I too have CMT only diagnosed later in life. All my life I had the same feet you have described and my ankles were so darn weak that I had many sprains. Why I ever picked nursing as a profession I will never know. Being on my feet all the time was not the most comfortable way to spend my work day. The ball of my foot soon developed fissures that split, bled, and had to be taped for me even to stand up. I also found out that I had partial spina bifida when I broke my back in the mid 80's after a fall. Since then I have had feet surgery at ayo Clinic with them never saying a word about the possibility of CMT. Finally, as my ankles were rolling as my peroneal nerve was degenerating, I went to a very trusted podiatrist. After an EMG tech suggested CMT was a possibility it was then confirmed. I now have had bilateral triple arthrodesis which was necessary. You are not alone. Vit C and another supplement has helped me immensely. I no longer have charlie horses that had my husband scurrying for the ice bags to pack me up at night. I have been " charlie horse " free since last summer. IT IS AWESOME!! It is far better to know what is the problem than not to know. There are things that can help so keep your chin up and God Bless! Candy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2005 Report Share Posted July 28, 2005 Welcome , My name is Cathleen, I live in Arkansas now but I lived in a small town called Buna, Texas until 5 years ago. I loved the doctors at the Houston MDA clinic. I know you will love this group. I have learned a lot here. Best of all you now have people to talk to who know what life is like living with CMT every day. Again welcome to this CMT family. Cathleen in Arkansas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2005 Report Share Posted July 29, 2005 Hello , I am a new member as well. I have found the group to be very supportive and informative. I am 37 years old and live in Somerset, Kentucky. I lived just south of Houston several years ago. My children have a grandmother, aunts, uncles and plenty of cousins still living there. I don't use braces, although my doctor is encouraging it. I can't take that step yet.lol I have had three surgeries and will be having another in early fall. My last surgery was on June 21 of this year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2005 Report Share Posted August 3, 2005 Welcome ! I also find living with CMT very fustrating! Please visit our current poll and give us your feedback on using Vitamins and Supplements for CMT. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2005 Report Share Posted August 4, 2005 Hi , My, you have had a time of it! I have had not terrific luck with the MDA clinic. The best physician I have found is a Doctor of Physical Medicine and Rehabilitation. She understands both the implications of CMT and what can be done to minimize symptoms. Your MDA clinic may refer you to one. Other than that - fatigue is a problem. Sometimes it's hard to figure out when you are tired or depressed. It's also hard to feel good about yourself when weight is an issue like it is for me and people tell you all you need to do is eat less and exercise more! I have found I have more energy when I do water exercises and stretches, but warm water is a must! As one phyical therapist said to me one day when I was really down in the dumps, " It's okay to have 5 minutes of self-pity a day, but not on my time! " Keep the faith. Penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2005 Report Share Posted August 5, 2005 Hi , Tt sounds as if you and I are in the same boat. I am fortunate to have insurance but it's CHA (can't have anything as my doctor puts it). There are plenty of things I need it won't cover. I'm also attending school and wondering if anyone will hire me once I get finished. I'm sorry to hear about your depression and self-esteem. If it helps I do understand. I will keep you in my thoughts and prayers. This group has many wonderful people in it. Some days just knowing there is someone I can talk to helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 Welcome , What part of Florida? I live in the Tampa area and try to do the best I can with what I have. I still work full time, it is an office job which sure does help, and I bikeride and walk a few times a week. You will find this group so helpful and informative... Welcome again. Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 Thank you, Gretchen. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 Welcome to our gang!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 Hi , and welcome to the group! I have CMT type 1 and was just diagnosed this year. This group is very helpful and supportive. Ask any questions you may have and someone will proably be able to give you an answer or suggestion to help. Everyone is great! Missy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 Hi : What a wonderful introduction. And yes, love is truly the only thing that matters in life. Some of my really good friends and I try to practice living in the moment, because we know that is all we have. We were never promised two days. Only one, and this very moment. Please accept my deepest sympathy for your recent losses. You sure do find strength in your times of trouble. Bless you. I am very interested in what you mean by a deteriorating diaphragm. I have had a shortness of breath since October of 2003. I have had just about every test known to man to find out why. I do know that the shortness of breath is not being caused by my heart and any pulmonary issues. My lungs etc are just fine. Through the process of elimination, my family doctor has arranged another appointment with my respirologist again on August 29th. In my humble opinion, and my family doctors, we think my phrenic nerve is causing a deterioration in my diaphragm. I know in some cases, CMT can affect the diaphragm. What did you do to find out you had problems with your diaphragm? Any help and/or information you could give me would be gratefully received. If you wish to email me directly my email address is dgbeckingham@.... Kindest regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2005 Report Share Posted September 14, 2005 Hello , I am more than willing to talk with you please feel free to email me anytime. Please understand I may not get right back to you do to my busy life style with 5 kids. So just be patience I will email you as soon as possible. Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2005 Report Share Posted September 23, 2005 Hi , I am 45 and just found out about 2 years ago exactly what I had, but have had the symtoms all my life. The communication between everyone here helps out so much and everyday someone else learns something else new. It's like a big puzzle and the more pieces you get the closer you are to, I'll call it, somewhat of a type of " closer " . Hope that came out right!?? It's really neat knowing you're not the only one. The funny thing is, it's the little things, things you wouldn't normally even suspect, that come together. On the humerous side, everytime I find something else out that is new to me, I tell myself, " I'm not a screwball afterall! " and that also works with any other querks I might have!! Lord knows I've got a bunch...Take it one day at a time and the secret word is " GRETCHEN " SHHHH!!! Don't tell anyone!! lol..Talk soon..take care... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2005 Report Share Posted December 11, 2005 Hi, ..... I, too, am a Pennsylvania - 71 year old female diagnosed about 2 yrs ago with CMT1B. Was wondering what, if any, symptoms you noticed in years prior to diagnosis that may have made you question if something was wrong. I thought I was fine until about 5 years ago when I started falling a lot and feet became numb and tingly with a tight sock sensation. After diagnosis, I remembered all the things starting in childhood that I thought were normal and of course, they weren't - like my gait etc. June --------------------------------- Find Great Deals on Holiday Gifts at Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2005 Report Share Posted December 12, 2005 Welcome . I am sure you will learn a lot in this group. glad to have you in our family here. Cathleen in Arkansas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 , Welcome to the group. I am so grateful that I stumbled on this site 4 years ago because I have learned so much through the posts by everyone. I too live in PA near Philadelphia and work in the area also. I also have been told that my CMT is type 2. Again welcome!! Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 , A great big Welcome!! Quote Link to comment Share on other sites More sharing options...
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