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54 and just discovered I have mild CP

jillybean1jillybean1 Member Posts: 2 Listener
edited May 2014 in Disabled people
Hi everyone, I hope you can help me, I have been given some old family letters and in them have discovered that as a child I was diagnosed with mild CP. I was never told about this so as you can imagine it has come as a bit of a shock. I have suffered with ill health most my adult life but have just got on with it, I had to give up work at 48 due to osteoarthritis, re occuring lung infections and also scoliosis which took ages to be diagnosed. My right shoulder is much higher than my left and gives me pain not only in my back but also my neck and head, without going on about all my other problems my question is this:- one of the doctors at my surgery is saying that there is no record of me having being diagnosed back in 1958 with CP and that it is highly unlikely that my past and ongoing problems are nothing to do with CP. She has suggested that I have counselling as I am feeling quite depressed due to how quickly I feel my body has aged, but she is quite dismissive of my concerns. I've been on a few websites and the majority of them confirm my thoughts. Has anyone got any ideas, if so I would be very grateful.

Replies

  • Nikki32Nikki32 Member Posts: 6
    Hi Jillybean,

    You have the right to demand a referral to see a consultant if you disagree with a diagnosis. State that you specifically want them to look for signs of C.P. Also in 1958 proper records were not always kept or up-dated properly due to a paper system whereby records could be moved around, lost etc. So there may just be a genuine error there that folk just are not aware of? Also one MRI I had there was a very nice registrar that looked at it and had to get someone else to check it as he couldn't tell if I had CP or a stroke. I reassured him it was CP as I was born with it and had it diagnosed at the age of four. I don't want to put your GP down in anyway but from what you have said it does sound a lot like CP and maybe getting a referral would help to rule it out if nothing more. Even if you have had scans in the past if folk don't know what there looking for then it can be difficult to get a diagnosis and the vast majority of folk within the NHS are brilliant. I hope things improve for you. Nikki.
  • jillybean1jillybean1 Member Posts: 2 Listener
    Hi Nikki, thanks for taking the time to reply. I have decided to request a referral mainly for my own peace of mind, there are too many coincidences that in my mind prove that my premature ageing is because if CP. I will post my findings in case someone else has this same issue, thanks again for your support.
  • angiemac79angiemac79 Member Posts: 3
    hi i have just read this and am elated to find someone in exactly the same situation except i am 41 and its my hips and spine and ankle i have issues with i would love to hear how you are now.
  • rcwallace22rcwallace22 Member Posts: 19 Listener
    Hi there,

    That's not good. Just wanted to let you know that I run a support group called Living Positively with Cerebral Palsy -https://healthunlocked.com/livingpositively. I Blog regularly about my experience and try to help others. I use the scope forum as well to meet new people and talk about cp. Have a look. Thanks
  • NoahNoah Member Posts: 430 Pioneering
    Living Positively with Cerebral Palsy,

    If there is isn't a book and TV documentary with that Title there should be! I think it would be very well received, and could help many.

    Noah
  • fifigibbofifigibbo Member Posts: 1
    I to have recently discovered that i was diagnosed with Ataxic CP back in 1963 when i was 2 years old.I always knew i had a few health problems as i was growing up, but to never be told about it is not nice. I also lost my Mum a few months ago, so im not able to ask her about it. I feel for anyone who has recently found out about a diagnosis .
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