Hi, my name is paul Feel as if my CP is being dismissed

paulgg
paulgg Online Community Member Posts: 2 Listener
edited June 2023 in Cerebral Palsy Network
Just looking for some help and advice, I was diagnosed with CP in my 30’s, when my body gave up on me! I am now in my 50’s and am struggling with pain which is now in what I used to describe as my good side. I don’t feel as if my Dr believes or understands me and I feel as if my CP is dismissed and has never been discussed with me. 

Comments

  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,863 Championing
    Hello @paulgg

    Welcome to the community! :) I am so sorry to hear you are in pain and don't feel your Doctor is being understanding. Can I ask, does your GP have multiple doctors under the practice? Could you get an appointment with one of them? 

    Just to let you know, I have moved your post into the cerebral palsy section of our forum and I'm going to tag @Richard_Scope who is Scope's Cerebral Palsy Programme Lead :) 
  • Richard_Scope
    Richard_Scope Posts: 3,940 Cerebral Palsy Network
    Hi @paulgg
    You are experiencing pain in your 'good side' due to you using it all of the time. As we age with CP some people experience post-impairment syndrome. You need to speak to your G.P. about this. Do you attend G.P. appointments on your own?
  • surfygoose
    surfygoose Online Community Member Posts: 541 Empowering
    That is such a late diagnosis. How did it feel finding out only in your 30s? I haven’t heard of someone being diagnosed so late before. Did it upset you that they overlooked it when you were a child and missing out on the early support? That seems such poor practise that as well as diagnosing you at such a late stage they did not discuss your condition with you properly and that they are dismissing your concerns around it. I hope you manage to see someone more helpful and they begin to at last help you.
  • paulgg
    paulgg Online Community Member Posts: 2 Listener
    Hi,
    Thanks for your responses, as a child I was told I had polio and had an operation to lengthen my achilies tendon as I could not put my foot flat. I also struggled with reading and writing and struggle with maintaining info. I only was given a diagnosis when I tried to claim benefits when my body gave up on me as I had been working as a dray man and couldn’t physically do it anymore. This led to me having to appeal the benefits and pay to see a consultant who diagnosed me with CP. Scope were the only ones who discussed my cerebral palsy diagnosis with me back then.
    I do not think there is a regular Dr in my surgery, i do go to the drs on my own but don’t feel as if I’m heard and my partner does say I divert away from the issue where I should stay focused.
    I feel as if the smallest task becomes so tiresome and now the pain is in my good side too
  • Richard_Scope
    Richard_Scope Posts: 3,940 Cerebral Palsy Network
    edited June 2023
    Hi @paulgg
    What I would do is take the information that I have included in the links in my earlier reply to your next G.P. appointment. Also, before I go to any medical appointments, I make a list of all of the questions that I want to ask the doctor.

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