Cerebral Palsy
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Hi, my name is RhabAdnam!

RhabAdnamRhabAdnam Member Posts: 8 Listener
Hi. I feel a little odd posting here, but for reasons I will shortly go into, the time has come. First, a history lesson. From as soon as I could walk it became clear I was different. I walked up on my toes. It later transpired that I had short leg tendons that made me do so. I had years of physio and eventually I saw a nice man at the hospital (I would have been about 10) about an operation. He asked me if I could live with it. I said I could and he said he thought I shouldn't have it. Over the years I fashioned a sort of stylised strut that hid it quite well unless I was tired. Fast forward 15 years. I read an upside down note on my records in my doctors surgery. "cerebral Palsy, mild ataxia of the limbs". That was news to me. I put it to him and he seemed very embarrassed. I think he assumed I had known. My mother had never mentioned it at all. And thinking back at the time, in my teens I used to have a nervous tic where I'd push my head over to one side. I remember hearing someone say it was "sad". I have also always suffered more with nerves and with muscle strains than the average person. I am now in my 40s and am having terrible symptoms (as yet undiagnosed) with tremors and limb pain/weakness. I have sometimes mentioned that old note on my file to my GP but they never seem all that interested. There could be many reasons but I do wonder if my general physiology + ageing is now a factor. If anyone has any views I'd be glad to hear them. 

Replies

  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello @RhabAdnam and a warm welcome to the community. Good to have you with us, and yours is a very interesting story.
    There are lots of very, very fine people in medicine, but I'm still careful of who I will trust and with what. Years ago I asked, through my GP, for access to my medical records from the time when I'd been a suicidal kid and teenager, and the hospital offered an apology for the fact that they had been 'lost'. Not all that long afterwards, following the death of my daughter, I had a massive panic attack that resulted in my being sent to an appointment with a psychiatrist. A bit of a waste of time as it turned out, but the key thing is that my old, fat, 'lost' file lay there on the desk in front of her :) Sadly, a lot in the medical community walk on eggshells in fear of being cited in a malpractice suit.
    So it sounds like you need some constructive advice here and what I'm going to do is to tag a gentleman in who may well be able to help.
    Please keep in touch and don't hesitate to get back to us if you have any further questions.
    Tagging @Richard_Scope
    Warmest best wishes to you,
    Richard
  • RhabAdnamRhabAdnam Member Posts: 8 Listener
    Thank you JennysDad. That is much appreciated. 
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @RhabAdnam

    Good morning & Welcome!!!

    It’s Great to meet you this morning.

    Your story is very very interesting indeed.

    I can offer you some info & advice if required????

    Please please let me know if I can help you around our site???

    We have got lots of “info & advice” to hand which may be off help/support for you???

    Many Thanks.

  • RhabAdnamRhabAdnam Member Posts: 8 Listener
  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    Hi @RhabAdnam
    Thanks for posting and welcome again to the Community. Just so I am clear, you have never been formally diagnosed with Cerebral Palsy, is that correct? From what I have read some of your symptoms could indicate Cerebral Palsy but I am not medically trained and cannot offer you a diagnosis. We are roughly the same age and my mobility has become less over time. Are you being seen by physiotherapists?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • atlas46atlas46 Member Posts: 827 Pioneering
    Hi

    Why don't you ask your GP, if you can read your medical notes held by them.

    This could resolve any misunderstanding about the diagnosis of any condition you may have.

    They cannot charge you for this.

    If you want a copy of particular notes, they will charge you.

    You could request same from any hospitals that you have attended.

    Hope this helps.
  • RhabAdnamRhabAdnam Member Posts: 8 Listener
    @Richard_Scope I haven't seen a physio since I was at school. i have had some muscle weakness problems lately which might be for any number of reasons and I have wondered if my possible condition has a bearing on it. I have never has a formal diagnosis to my face but I strongly suspect my mother was told when I was born. She has dementure now sometimes does not know who I am so I will not find out that way. She has occasionally hinted that there was some difficulty with my birth but that's all I got. Families eh? 
  • RhabAdnamRhabAdnam Member Posts: 8 Listener
    @atlas46 I am having some issues with my doctor right now. I asked them for all my recent blood test results today and they were unable to produce them. I have B12 deficiency and maybe diabetes so I wanted my actual results. She looked on the system and lo and behold the cupboard had had a visit from the mice... 
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