What is Charcot-Marie-Tooth Disease
Charcot-Marie-Tooth disease, also known as Hereditary Motor and Sensory Neuropathy (HMSN) or Peroneal Muscular Atrophy, is a heterogeneous inherited disorder of nerves (neuropathy)...
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I'm 24 years, i have recently found out that i have swyer james syndrome, developmental displaysia of the hip, and a muscle disease and a possible connective tissue disease, the doctors believe it is Charcot-Marie-Tooth Disease. About 6 weeks ago, i had a muscle biopsy, still waiting on the results. I honestly don't remember a day without pain. I can barely feels my hands and feet. Its hard to walk and do things. Its just so hard to be a parent and not being able do things with your kids. I feel very alone going through this and no one knowing how it feels, or what is happening.
Posted on 08/05/09, 11:08 pm |
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Hi, "Hfox25". I'm so sorry to hear about your problems and feelings of being alone. I've been feeling similarly which is why I'm logging in to these support websites. You are very much NOT alone, as I'm finding. I'm also finding some truly encouraging reports of success, all the way from lifestyle changes, through surgery, to stem cell research. Check out this site about stem cells: http://www.hnf-cure.org/livingwith... . You may also want to log in to http://www.mdjunction.com/charcot-...
Stay in touch, and have faith! 
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Here's another very active support website. You have to set up an account, but there's quite a bit of activity. Hope it helps! http://health.dir.groups.yahoo.com...
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Yes... know how you feel. I am a single mum and my daughter has to hold my hand so i don't fall on the uneven surfaces.... it took her a while to realise i wasn't holding her hand for her.. it was for me.. hahaha, you have to laugh or else you will cry.
I get down too, i have been vaguely diagnosed with cmt and now my neurologists have given up on helping me. I am thinking these days that my head space plays a big part in how my body is feeling. I think it is important to stay above it mentally. it is not who you are its just something that was sent our way to test our strength. only strong people are sent these enormous challenges. stay strong and chat whenever you wish all the best
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