Results 1 to 4 of 4

Thread: "charcote-marie-tooth"

  1. #1
    Join Date
    Oct 2003
    Location
    OK
    Posts
    2

    "charcote-marie-tooth"

    I just thought I better share this information on this post:

    The diagnosis was "charcote-marie-tooth" [named after three French doctors] or "CMT" it is handled by doctors who handle muscular dystrophy/
    Scoliosis is just one of the diagnosis for this.
    I have discovered a line in my family has this in almost all their members.
    I am going to speak to my Dr. about this new information.
    I have Scoliosis, very HIGH arches, and muscle tone failure.
    DNA test will prove it one way or the other.

  2. #2
    Mary Lou Guest
    Linda,

    My daughter had surgery to corret her Kyphoscoliosis five months ago and her doctor strongly believes that CMT is the underlying cause. In fact, she has an appt. with a neurologist later this month to be tested. On her Dad's side of the family CMT affects about five or six generations, but Jamie is the only one with Kyphosis or Scoliosis. If I hadn't done my homework on Scolisis, we would have never made the connection!

    Jamie has VERY flat feet, was always turning her ankles when she was little, she no reflexes in her knees, very little reflexes in her stomach. Other than that, she shows no symptoms. Please know that from what I've been told there is a blood test the doctors can do, but it is only for two types of CMT, I think and there are three or four different types.

    Good luck. Keep us posted on what you find out.

    Mary Lou

  3. #3
    Join Date
    Jan 2005
    Location
    San Diego, California
    Posts
    90
    I too have CMT. I was diagnosed at the age of 8 with CMT Scoliosis and Kyphosis. There are certian types of CMT that seem to have a strong connection with Kyphoscoliosis. I want to say type 3 but I'm not positive. There is probably some of the best information I have seen about CMT at www.charcotmarietooth.org and mdausa.org. I hope this is useful. Keep the information coming :-) Thanks.
    Jennifer

    26 years old. Diagnosed with severe Scoliosis/Kyphosis and CMT at the age of 8. Have had a total of 6 surgeries, 4 on my spine and 2 on both of my feet. Including rod removal surgery. I am fused from T-2 to T-12.

  4. #4
    Join Date
    Apr 2005
    Posts
    13
    My 15 year old son was diagnosed with CMT 2 years ago. We noticed the kyphosis in his back and took him to see Dr Emans at Boston childrens hospital. Dr Emans noticed the high arches and lack of reflexes and sent us for a neurological consult. Sam had blood work done for DNA and was told he has CMT type 1A. He cannot feel vibration sensations in his lower legs. He is a very active kid and his CMT has not progressed. He wore a Milwaukee brace for a year and half, but it did not stop the kyphisis. He is having anterior and posterior surgery on 6/21.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •