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Coping With Charcot-Marie-Tooth Disease

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ref marilyn jul 14th 2007
by: mark r on Fri, Aug 03 2007
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my name is mark and im 41 years of age. i have just discovered that theres info on net relating to c.m.t. After reading the views of studys held on the subject i was amazed at the lack of insight, that is until i read your story marilyn. i suffer from all u mentioned and (am now feeling much pain in shoulders and neck as well as feet, hands, knees, hips and back.)
my feet had started to club from a young age , tho my mum and dad didnt treat my pain as a young child.

An aunty had taken me in to be assessed at the age of 15. i hadnt had any treatment be4 and was told corrective surgery (orthapedic) would help.

i am sure the knees and hip pain is from the way i walk resulting from ankles being fused. so all my life has been as u would know marilyn a painful lesson. for the last 3 mths the shoulder , neck and upper arms are making themselfs known in a very painful way and are making life very hard. ive never been one to whine and have always worked hard, mostly labour type work and have been in the last couple of years doing less phyically demanding jobs. it seems to me the less i do the quicker the body seems to get worse. so im thinking maybe i best get reassessed and maybe get more physical to retain what i have left.

i did try innersoles for my shoes at the age of 25 but it made knees worse. i do struggle to hold cups etc. now and
hands and fingers are much worse as i reflect over the years. i have a youngish family and a house to pay so i dont get time to assess how i feel but am taking this first step. any info anyone can give me to improve and maintain my current
condition would be much appreciated.
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August 2007

  • Since I was 12…. - by Shannon - (Thu, Aug 23 2007)
    I first noticed that my legs were hurting when I was about 7 or 8. Around this time I was really interested in getting into gymnastics. During my 7th grade year, I made the gymnastics team at my school. This is when I found out that my legs were really different and that I had a really hard time running and jumping. [more..]
  • Let’s try and help each other! - by Jennifer - (Fri, Aug 03 2007)
    My name is Jennifer. I’m 28. My Gma, Mom, Uncle, and cousins age 10 and 13 all have cmt My 10 yr old cousins ankles are turned in and her feet slap the ground like my mom’s. It’s so bad she can’t keep up with other kids or walk an amusement park. We must all be studied on an individual basis [more..]
  • ref marilyn jul 14th 2007 - by mark r - (Fri, Aug 03 2007)
    my name is mark and im 41 years of age. i have just discovered that theres info on net relating to c.m.t. After reading the views of studys held on the subject i was amazed at the lack of insight, that is until i read your story marilyn. i suffer from all u mentioned and (am now feeling much pain in shoulders and neck as well as feet, hands, knees, hips and back.) my feet had started to club from a young age , tho my mum and dad didnt treat my pain as a young child. [more..]
  • Life with CMT - by Amber - (Thu, Aug 02 2007)
    My 7 year old son and I live with CMT everyday. I have difficulty with simple tasks that healthy people take for granted. My son is progressively worse than I was at his age. I feel terrible when I think about how much worse it will be for him when he is my age. It is difficult to find a doctor who knows anything about this disease. I don’t feel like I get any answers from any of the doctor’s we see. [more..]

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