Welcome to CMT and Me

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Linda Crabtree

I’ve lived with Charcot-Marie-Tooth disease for 75 years and it has been quite a journey. From 1984 until 2002 my husband, Ron, and I ran CMT International. During that time I met thousands of people with CMT, learned a lot about our condition and published 103 CMT Newsletters. That was then. This blog features life as I live with CMT now. Please look below for regular posts and please subscribe if you like what I have to say. Knowing that people care enough to read my words makes my day. I can also be reached at linda@lindacrabtree.com and I’ve a personal page on facebook. As well, I run CMTCanada on facebook.

 

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7 Responses

  1. Hi Linda,
    I am your age & fortunately I’m still walking—slowly & with AFO’S on my legs but on my own steam so far. It is interesting you mentioned having a cyst on your spine right where all your pain comes from. I too have a benign fatty growth on my tailbone, on the MRI it looks like it’s about the size of a tennis ball. I’ve had so much pain for so long now & just had an epidural in my back & cortisone shots in both hips. I am so good now but it makes me think Dr’s are missing something in my diagnosis if steroids help so much. I have many things going on in my back, all lumbar disc are bulging into the nerve, several compression fractures, deg. disc disease bone spurs, arthritis, & scoliosis. The Dr’s have said that having so much muscle atrophy in my legs from the CMT has made my torso have to do most of the work of standing & walking.

    My hands too have lost lots of strength & dexterity. I’m not able to do jewelry with small beads anymore, drop things 5,000 times a day & just generally have trouble doing many things as my fingers just can’t seem to work well anymore.

    I am seeing a new neurologist in a town about 75 miles away that treats CMT. I was just wondering what questions should I be asking? What should I be sure to tell him? I’ve had EMG’s & NCS but not the blood test since there was no treatment anyway. I do have boys but have never seen any indication they have CMT.

    I have been taking the Cymbalta & it has helped the stabbing pains in my feet & legs so much I guess I’m just choosing to sweat now. And I live in a HOT climate. It’s kind of embarrassing many times. I’ve been on 1800mg a day of Neurotin for quite a few years too. I also take Wellebutrin & Celebrex & they cause sweating too.
    Thanks for your time.
    J

    • Hi Jeannie: Good to hear from you. Sorry you are in such pain but that’s what we face with CMT sometimes. If I were going to see a new doctor I’d have a list of what’s wrong with my back, etc., and I’d take the results of the EMGs and NCS but don’t have any more nerve conduction studies. They are for diagnostic purposes only and, for some of us, they hurt like crazy. You can say no if you’ve a mind to. I have, several times. It’s akin to torture for me. Take a full list of what drugs you take and how much. Then ask what he thinks he can do for you that others can’t or haven’t.
      If I were on that many drugs I’d never get out of bed. Really. I simply don’t tolerate drugs well. Does the Cymbalta shut down your kidneys and bowels?
      Talk about similarities. I, too, used to do micro beading. Tiny, tiny beads. I used needle-nosed pliers as my fingers weakened and then finally sold everything and bought a mink coat with the money. That was 27 years ago. The coat is now the lining of a microfibre one that’s toasty warm and my hands won’t open anymore.No more beading but I can still paint. I bless those little mink who gave their lives for me every time I put that coat on. It’s the warmest thing I’ve ever worn.
      Let us know how you do.
      Linda C.

  2. Thanks for your blog and for sharing your knowledge. I am just getting started since I was diagnosed with type 1a in May of 2010.

  3. Dear Linda,
    I was just diagnosed last week with CMT and the family and I are waiting for the genetics team to come to my home and do the confirmation with the blood tests.

    I have been struggling with symptoms for 12 years now and not one doctor diagnosed me or even wanted to try. My hands and feet look normal and that is what they went by even though my other symptoms were so strong and my family history showed many with CMT.

    I’m angry, sad, frustrated, bitter, confused but happy that I have now finally been diagnosed. Now I can move forward but really dont know how.

    I hurt all over – what do I take?

    I am trying to be patient but it is so hard after waiting for so many years. Any advise you can give me would be greatly appreciated.
    My family has been extreemly supportive and my Aunt and cousing have given me lots of advise as well so I am very thankful, but am striving for more infor and what can I do to slow this down. The last 3 years have been really rough.

    Thank you for having this site and all the information on it. I feel better that this is here.

    Jodi M.
    Michigan

    • Hi Jodi: Be patient. Even if you do have a diagnosis, you will still be the same person. Go slow. When you do get your final type diagnosis, find out everything you can about your type. You can do this by joining a forum. Angela Graham runs a very good one. Get in touch with me at linda@lindacrabtree.com and I’ll give you the contact. Limiting stress and working within your capabilities will help you maintain what you have rather than lose it. Don’t push yourself. When you are tired, rest. You won’t hurt as much if you are well rested. I take Advil for allover pain. You don’t say how old you are or if you have a family to look after. Talk to me and I’ll get back to you. I’m having my office painted right now. If anyone else has any advice for Jodi, please post. Talk soon.

  4. Hi Linda 🙂
    I am 43 and manage CMT.
    It was great to read your post about having bronchitis …not because I’m glad you had bronchitis ;P haha because hearing someone speak about living with CMT helped me take a relaxed breath and to find someone else who lives with the same issues!!!!
    Thank you for taking your time to reach out! I needed it 😉
    XOXO
    Jane Reyes

  5. I thought this would helpful and encouraging I’m a landscaper and l have CMT so that just proves u can live a close to normal life doing u want to do (landscaping is one of my passions)

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