mum of three

I'm a 31yr old mum of 3 young children i've had problems with my feet most my life with walkin with my feet inwards and doctors always tellin my parents i will grow out of it. From the age of about 17-18 i walk on the side of my feet with the right one hurtin more than the left been goin to the hospital for the past 10yrs then they tell me i have cmt diesese.

Not bein given any info on the subject and now havin problems in my lelf hand i thought i would look on the net for info and if its contected when i found this site to fine more people suffer with this diesese and have the same isuses i have it very conforting to know im not the only one

5 Replies

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  • Welcome to the community! seems that there's an enormous amount of ignorance about CMT among the non-specialist medical profession, and the quality of advice and help etc you get will depend mostly on the chance of where you live (how good your GP is, and then whether there is a competent / interested neurologist at your local hospital) After all only about one person in 2500 has it, and the severity of symptoms varies enormously - even within the same family. Some people have practically no symptoms, some have a lot of pain, some can walk miles or take part in active sports, and a few are in wheelchairs.

    You are more likely to have problems with your feet (clumsiness, tripping, impaired sensation etc) before your hands show symptoms (weakness,impaired sensation).

    At least the people you'll meet here will have a huge range of experiences of the disease, ways of coping with it - and other people's reactions, too.

  • Always good to welcome a new CMTer, my name is Catherine and was diagnosed 2 years ago, I have lost the sensation in both my hands can't tell hot or cold and now struggling with wet and dry, kids keep asking why I'm putting away damp clothes lol, I wear leg braces to stop my foot drop and use sticks outside but I stay as positive as I can x I also started a Facebook page CMT glasgow- Catherine Martin, there are loads of other pages on there too also CMT United Kingdom is fantastic and Karen there is a gem xxx

    My email address is kitbo21@yahoo.co.uk

  • Hi Cat, welcome to the group, you'll find lots of help here. My story is very similar to yours, I had had a few symptoms as a child (I'm 56 now) & loads of foot surgery by my mid-twenties. It was in my 30's when I had 4 children that things started stepping up & my legs got weaker & my hands developed symptoms. I went to see a GP who was rubbish & ignored my symptoms & said 'go home & get on with your life,' but fortunatly I moved & my new GP & subsequent neurologist were superb.

    It is so random how we get treated, but it helps to be able ot ask questions here, Karen at CMT UK is super.

  • Hi Cat Welcome to our World, don't worry we all are a friendly bunch on here and most of your questions get answered by someone. Now that your hands are starting to show signs of CMT you will learn to adapt to just about anything, the golden rule with our disease is "Don't let it grind you down, stay strong, stay positive and don't ever let it beat you.

    Pam

  • can i just thank everyone for ur support.With all the yrs of being bulled for anything thats different to others i have always hid the fact i have cmt by not waring my surpports but now im going to hold my head up high put my surpports on and walk tall and thats all thanks to u guys x

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