Diagnosed with HNPP — Scope | Disability forum
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Diagnosed with HNPP

System
System Posts: 754 Scope online community team
This discussion was created from comments split from: New to this forum - HNPP.

Comments

  • 1393ghannah
    1393ghannah Member Posts: 2 Listener
    Hi I was diagnosed with HNPP around 6 months ago after being told it was all in my head and due to anxiety. I feel very alone with this diagnosis as none of my doctors even know what it is and I get told that it only has a few symptoms ? just tingling and numbness and maybe weakness. However, my symptoms are pain, atrophy, tingling, numbness and twitching, that was my first symptom tbh. I would love to hear any symptoms that anyone else has with this condition I have been told of a genetics doctor they car vary from patient to patient. Thanks x
  • Cazann
    Cazann Member Posts: 83 Pioneering
    Hi I was diagnosed with HNPP around 6 months ago after being told it was all in my head and due to anxiety. I feel very alone with this diagnosis as none of my doctors even know what it is and I get told that it only has a few symptoms ? just tingling and numbness and maybe weakness. However, my symptoms are pain, atrophy, tingling, numbness and twitching, that was my first symptom tbh. I would love to hear any symptoms that anyone else has with this condition I have been told of a genetics doctor they car vary from patient to patient. Thanks x
    Hi. As I've said in earlier posts, I have HNPP, that was diagnosed in 2014. I have two sisters with it and my son and his son, have the symptoms (but not yet tested) It seems to be a rare genetic disease but that could be because most people, don't get the right diagnosis. My symptons started over 30 years ago but they were just mild numbness in my fingers. especially when carrying bags etc. I put it down to 'bad circulation' that came and went. I also suffer from osteoarthritis and thought that some of the pains and numbness in my legs as well as my hands, were due to arthritis. I went to my doctor and he said, 'It's nothing to worry about'. So I carried on. To cut a long story short. My sister was having problems walking and her doctor sent her for scans etc, as they thought that she had MS. After a blood DNA test, it was confirmed to be HNPP. I asked my doctor for the same test and it was confirmed as HNPP. I now have numb fingers, toes and pains in my legs, shoulder and neck. There are many problems that my sister's have that I can relate to. There is a brilliant FaceBook page. It's called HNPP and CMT support group. It is a closed group but you can join and only those who join it can read what you put on. The group are very friendly and I have found out more about HNPP, than I have from the medical profession. Good luck and I hope that you can find out more. xx
  • Adrian_Scope
    Adrian_Scope Posts: 8,576 Scope online community team
    Hello @1393ghannah and welcome to the community. :)

    I'm sorry to read how alone you're feeling with your diagnosis. I hope you'll find lots of support here and that others members will share their experiences with you. I'm sure many of our members will be able to relate to the frustration of not being listened to. 

    How long were you living with the symptoms before you finally got your diagnosis?
    Community Manager
    Scope

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  • 1393ghannah
    1393ghannah Member Posts: 2 Listener
    I only had the symptoms for about a year they came after I gave birth to my youngest son. I only had twitching at first, then buzzing and painful skin to touch. Now everday I feel it’s something new but all my neurologist says still is it’s anxiety even after a diagnosis of HNPP. 

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