Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 Hi Deb: I was diagnosed via DNA testing in November of 2000, to have CMT1A at the age of 51. After many tests, and seeing many specialists over about a 2 year period, I was finally sent to a neurologist who suspected CMT immediately once he saw my high arches. He arranged for EMG testing and arranged an appointment for me to have DNA testing. Some of the testing involved arthritis, ear/nose/throat problems, sinus problems, etc. etc. The major symptoms I had were being light headed, dizzy, lack of balance, sprained ankles all the time, pain in my hands, fingers, feet and toes. CMT diagnoses answered many questions I and my family doctor had about many of my symptoms. Unfortunately many of we baby boomers did not have access to some of the information available today. I suspect that peripheral neuropathy was not on our doctors list of things to check for back in the 50's, 60's etc. I also lived in a relatively small city in eastern Canada for the first 30 years of my life. Moving to a larger town within a 30 minute drive to downtown Toronto improved the access to a wider range of medical specialist available to me. Regards, Beckingham Corporate Nice Guy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 Dear , It would seem that it did not matter so much where we lived, large or small cities. I have been to Mayo Clinic 2 times many years ago for my feet problems and they lowered the arches, cut on me, put me in casts, tested and tested, but never for CMT. I think awareness is just in the baby stages of getting out. I know more people who have asked me know what they have since they know what I have. At least 80% of them have CMT and their doctor had no idea what it was. Awareness is so critical to get out there since there are so many medications, anesthesia, etc. that can exacerbate our disease or even cause death with unawareness. Help get it out there. Candy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Deb, I actually was diagnosed with ankylising spondylitis at age 42 after two years of a fever of unknown origin. Three years ago I had by L4L5 fused and woke up from surgery with the loss of feeling in several parts of my right and left leg. Some came back, most did not. I was told I had a 1cm hole in my L5 nerve root and that was the cause for the damage. One doctor blamed it on the other etc. I continued to have symptoms with the feet deforming, pain lost of balance etc and my rheumatologist sent me to a neurologist after I complained for two months. She did the test and here I am. Looking back my mother had CMT but never diagnosed. She suffered tremendously the last 20 years of her life with little or no help except for pain pills. I guess you could say my mother has finally been diagnosed. I am not sure what type I have. The doctors say it is mild but who knows. I go back soon and am going to press them to attempt to tell me what kind and discuss the vitamin c options. Let me know how it is going for you. I choose to stay active but at times it is hard. Take care. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Hi , Hi my name is Janet,I too was diganosed with CMT at the age of 51,I truely believe I had it longer than that.I had kellys tendon back in the 90's.Surgey on my left foot.Back in the late 80's I was dx with Simplex Reflex Dystrophy.I was unable to walk at all for 2 years.Than back in the 70's I was told I had a form of Muscular Dystrophy.Little did I know, that they knew what they were talking about.Although I guess they did.I have an appt. to see MDA on the 10 of June hopefully than I 'll kmow what type I have.But right now I can at least know I wasn't the only one dx. with it at 51.Hugs, Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Hi Candy: Wow - even the Mayo Clinic! Who would believe it - eh? Yes you are so right - Awareness is so critical. The public and the medical community needs a wake-up-call when it comes to diagnosing CMT. Why is it the last thing our medical profession thinks about? Some days I have felt like an old car with a simple problem, but everything under the sun was fixed and billed for while they are trying to fix the simple problem. Tests, tests and more tests. When the neurologist saw my high arches and slightly bent toes (hammer toes), he suspected CMT immediately. Awareness at the family doctor - GP needs a great deal of attention. Regards, Beckingham Corporate Nice Guy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Janet, I am turning 52 and just finding out about CMT. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 I was diagnosed at about 10 I think - lucky me! I got smacks as a kid for walking on tip-toes all the time. I knew I couldn't stop but thought, like my parents, that it was a habit I had formed and had got stuck like it. Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Dear Steve, Oh my, you could be my daughter (lol, not really). However, for my daughter we constantly said " heel toe, heel toe " . I thought it was a habit she had acquired that I was bound and determined to break. We took her to her pediatrician, nope - nothing wrong. We took her to the orthopedist - nope nothing wrong. Well, guess what - SOMETHING WRONG. After many years of her being hastled by us, horse jumping lessons to try to get her heels down, ballet until her balance stopped her, harassment from children in her class she finally grew up. It was not until she was in her late 20's, had fallen alot and had had ligament surgery in both ankles did a very progressive " podiatrist " suggest she may have CMT. No way I said as she called and asked if I had ever been told that since it is hereditary. I had been to Mayo Clinic, and other places after breaking my back and absolutely no one said anything about CMT. Therefore, " stop crying " you do not have it! Well, guess what - finally my pediatrist found that I had it as my ankles were rolling to the point that I was in severe pain and needed bilateral triple arthrodesis. My daughter told me later in life that she thought we were nuts cause she always thought she was walking heel toe. Her mind said she was but her eyes said NOT. I apologized to her so many times with tears but we both now have answers as to why we were " dorky " . Somehow that makes it easier and better to have a reason. Now we just accept it and go on. We are hoping for improvement with the Vit C and have already seen improvement. How far this will go, who knows but we will take everyday as it comes and live it to our best ability. Take care. Candy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 Candy, What a neat story you told. What a healing for mother and daughter! Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2010 Report Share Posted November 16, 2010 My son was diagnosed with CMT 2 at age 10. Lori Quote Link to comment Share on other sites More sharing options...
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