Hereditary neuropathy and foot specialist- worried about my diagnosis — Scope | Disability forum
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Hereditary neuropathy and foot specialist- worried about my diagnosis

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crazylegs87
crazylegs87 Community member Posts: 1 Listener
edited October 2018 in Disability rights and campaigning
Hi I am a new member. I was diagnosed with HNPP hireditory neuropathy with liability of pressure palsies 
3 years ago I had my first visit with a neurologist on Tuesday because my doctor doesn’t know anything about the condition. So I described my symptoms and she’s saying not all my symptoms as associated with HNPP so she’s taken blood tests, arranged for me to meet a specialist that knows about my condition she says a very long wait then a foot specialist to make insoles for my shoes & mri scan and then dropped the ms bomb. I’m obviously worried sick now and waiting to get an appointment for an mri has anyone else been through this? 
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  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger
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    Hello @crazylegs87 Pleased to meet you welcome.

    Thank you for joining and sharing.  Sorry to hear this. I know it is never easy to deal with any diagnosis of any conditions.

    Understand the anxiety and I know other members of our community might be in touch to offer what support and advice they can give.

    In the mean time have a look at our information and advice . Talk about Specific Conditions. Comments from members of our community. Hope that gives you much needed reassurance.

    We are a supportive community. Friendly, care and share. 

    Hope that helps.  Please ask if you need to know anything.  Some one will know.

    Please take care. You are not alone.

    @thespiceman
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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
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    Hi @crazylegs87 welcome to the community!

    Sorry to hear this. Must be a very worrying time for you. I hope a member of the community will be able to advise you and offer support.

    If there is anything at all that we can do for you then please do not hesitate to let us know! :)
    Disability Gamechanger - 2019
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  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
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    Hi @crazylegs87, and a warm welcome to the community!

    Thanks for sharing this with us, and I'm sorry to hear that you're going through a difficult time at the moment. Hopefully some members will be in touch soon, but in the meantime you may like to check out these related discussions around various forms of neuropathy. I hope it helps to know you're among likeminded people who are here to support you.

    Do keep us updated and we'll advise where we can!
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