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Cerebral Palsy and Premature ageing

milliemollie
milliemollie Member Posts: 7 Listener
I'm 43 and started with pains in my legs around three years ago. My left leg became painful and has kept giving way and the first time I actually fell down,  the second I broke my fall so didn't actually fell. 
The cerebral palsy affected my right side,  so my GP said my left side was wearing out due to overcompensating for the right. 
I am in constant pain all over my body.  I went to see a rheumatologist and they said I didn't have arthritis even though some blood tests came back positive, he said it was a red herring? I asked about Fibromylagia but he said no to that but the pain and tiredness is getting me down.He didn't do any tests while I was there.  I have sharp pains, burning sensations,  even using this tablet with one finger is giving me pain. 
Any advice would be welcome,  should I keep going back to the GP,  until I get to the bottom of it.  I even shout out in pain, evenings my elbows hurt. 
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Comments

  • CockneyRebel
    CockneyRebel Member Posts: 5,216 Disability Gamechanger
    Hi @milliemollie and welcome

    We cannot give medical advice on the forum, but you do need to find out what is happening. Your GP is the person to talk to and who should be able to refer you to any other specialist.
    Be all you can be, make  every day count. Namaste
  • Richard_Scope
    Richard_Scope Posts: 3,115

    Scope community team

    Hi @milliemollie
    Thanks for your post and it's good to meet you.

    I'm sorry to read that you are having such a difficult time and I can relate to the increase in pain. People living with CP can experience 'physiological burnout' due to the stresses and strains that we place on our limbs/joints when we move. What you describe sounds different as you say you have constant pain all over your body. I would definitely keep going back to your GP or seek a second opinion!

    I will include some information on Ageing with CP and Post impairment Syndrome that you can look at and discuss with your GP.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • milliemollie
    milliemollie Member Posts: 7 Listener
    Thank you  for the information, only found out that I had CP by chance at the doctors 10 years ago.  always  was told  by parents that I was born paralysed down right side. They were never told of the correct name either but this was in 1970s. Have had no support from healthcare professionals since a child.  Thank you again. 
  • Richard_Scope
    Richard_Scope Posts: 3,115

    Scope community team

    edited April 2019
    Hi @milliemollie
    I am hearing that more and more recently. From people born in the 80's and 90's too. I'm around for a chat should you need it.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

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  • Matildacat
    Matildacat Member Posts: 18 Connected
    This is interesting. I was born in 1960 and have very limited use of the right side of my body. I have not seen a medical professional about this since I was 13.   I am guessing I have CP but no one has actually ever told me I had to have a knee replacement to my good side in May so this has been an additional problem. I really do hope that there is more support and understanding for children and young people who are dx today. Thanks for reading my rant.
  • Richard_Scope
    Richard_Scope Posts: 3,115

    Scope community team

    Hi @Matildacat
    It's good to have a rant! So, you didn't ever receive a formal diagnosis? How is the new knee?
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • Matildacat
    Matildacat Member Posts: 18 Connected
    Hello,
    If I did have a formal diagnosis it was never mentioned. I guess I should go to my Gp to talk about this. But I've seen enough of Drs recently but one to think about for sure. Knee replacement is going okay - just a long journey I think.
    Thank you for your reply Richard.

  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Hi @Matildacat, I can understand you not wanting to go back at this time. Maybe you could go back once your knee is doing better? I hope it is going okay and it's beneficial in the long run for you :)
    Scope

  • Matildacat
    Matildacat Member Posts: 18 Connected
    Thank you Chloe. I will as I think it would be good to have a formal diagnosis.
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    No problem! If you are diagnosed then it could give you access to more support :)
    Scope

  • Richard_Scope
    Richard_Scope Posts: 3,115

    Scope community team

    You are entitled to view all of your medical records from birth @Matildacat. I have spoken with many, many people from all age ranges who have not been formally told that they have CP for whatever reason.

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • Matildacat
    Matildacat Member Posts: 18 Connected
    Thank you both. I will look into it. It would make interesting reading
  • Clairec
    Clairec Member Posts: 9 Listener
    Was wondering if any of you can help me with a bit of advice my daughter was diagnosed with CP when she was a year old we were told that with treatment she would live a normal life and would walk although aided. We went to see if she could have SDR surgery last Xmas told it was a no go so when back home thinking at least we have yearly botox though last week went for the normal yearly assessment for botox and was told she was getting worse and they would no longer be giving her the treatment and as she ages she will be wheelchair bound she is only just turning 8 now and wanted to know how things will progress how painful will it be and how fast will she go down hill and just what to prepare myself for would appreciate any help. Thank you. Claire xxx
  • Richard_Scope
    Richard_Scope Posts: 3,115

    Scope community team

    Hi @Clairec
    Welcome to the community, it's great to meet you. It is really important to remember that CP affects everybody differently so your daughter's experience may be very different from mine. I'm sorry to read that your daughter wasn't suitable for the SDR surgery, not every child is. I am surprised that medical professionals believe that the botox treatment should be stopped. Botox is very effective at helping to manage muscle tightness. 

    Physiotherapy is very important to help maintain movement and flexibility and strength. Swimming is a particularly good way to exercise the limbs. Here is some information about Hydrotherapy and Physiotherapy

    I would be really happy to talk with you further :smile:

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • Clairec
    Clairec Member Posts: 9 Listener
    Thank you for getting back to me. My daughter has weekly physio therapy at school I move so she could attend this school as its a mainstream school but has children with disabilities in to and they get physio there. So means less time out of school for her. The stopping of the botox came as a huge shock to us aswel we are trying to get out heads around everything at the moment and what to do now we currently live in a house but now a feel a flat would be better for her as all on one level but local housing people are only offering me homes miles from were I am now and need to be in this area for school as my young son attends the same school as my daughter and my parents and sister are here for help but they don't think that matters but as I now know things are going to worsen I want to get sorted sooner rather than later I want to make her life easier as soon as possible she has no idea of what's to come she knows she has CP and that they are stopping the botox but do you feel I should tell her about her ending up in a wheelchair or wait a while as she only 7 almost 8 and I want her to be enjoy her childhood with out extra stress but at the same time dont want her being mad for not telling her sooner when the time comes. 
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    edited July 2019
    Hi @Clairec and a very warm welcome to the community! Unfortunately it is hard for us to know how things will progress with us not being medical professionals. I'm sorry to hear that botox would no longer be suitable for her - I too had these as a child. I have cerebral palsy myself and I know that it can also vary so much from person to person. Is your daughter currently receiving any other support? Occupational therapy and orthotics can be really help in maintaining mobility and keep muscles as strong as possible :)
    Scope

  • Clairec
    Clairec Member Posts: 9 Listener
    Hello thank you for your reply she has weekly physio at her school she uses walking sticks in school and a walking frame for the play ground she also has sticks at home but is reluctant to use them at home as she wants to be like her younger brother so she will walk around holding the walls or anything she can get hold of. She takes baclofen to help her muscles and that dose is set to increase to. We are sort of carrying on with everything as usual but just wanted to know how to prepare for the future. 
  • Richard_Scope
    Richard_Scope Posts: 3,115

    Scope community team

    Your daughter may not have to use a wheelchair at all. Many people with hemiplegic or diplegic CP are able to walk well into later life. She may experience pain with her ankles and knees. As my colleague, has mentioned Occupational Therapy and orthotics can make all the difference.

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • Clairec
    Clairec Member Posts: 9 Listener
    Thank you for the reply her consultant on Tuesday at her appointment told me that as she hits puberty walking won't be how she gets around anymore she will use her wheelchair more and more until that's how she is mobile and even mentioned electric wheelchairs. I should maybe have spoken to the doctor more about this but I just went all fuzzy and just wanted to get home to be honest. 
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Hi @Clairec, I can understand being overwhelmed by the appointment, it is a lot to take in when given that kind of news. Do you have another appointment with them at all? If you go to your GP or Pediatrician they should be able to make other referrals if your daughter hasn't been considered for splints or occupational therapy support. Please do keep us updated if you'd like :)
    Scope

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