Cerebral Palsy
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Cerebral Palsy and Premature ageing

milliemolliemilliemollie 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. 

Replies

  • CockneyRebelCockneyRebel Community champion Posts: 5,259 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_ScopeRichard_Scope Administrator Posts: 2,328 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 - Cerebral Palsy

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  • milliemolliemilliemollie 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_ScopeRichard_Scope Administrator Posts: 2,328 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 - Cerebral Palsy

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  • MatildacatMatildacat Member Posts: 15 Listener
    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_ScopeRichard_Scope Administrator Posts: 2,328 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 - Cerebral Palsy

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  • MatildacatMatildacat Member Posts: 15 Listener
    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_ScopeChloe_Scope Administrator Posts: 10,581 Scope community team
    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 :)
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  • MatildacatMatildacat Member Posts: 15 Listener
    Thank you Chloe. I will as I think it would be good to have a formal diagnosis.
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,581 Scope community team
    No problem! If you are diagnosed then it could give you access to more support :)
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  • Richard_ScopeRichard_Scope Administrator Posts: 2,328 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 - Cerebral Palsy

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  • MatildacatMatildacat Member Posts: 15 Listener
    Thank you both. I will look into it. It would make interesting reading
  • ClairecClairec 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_ScopeRichard_Scope Administrator Posts: 2,328 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 - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • ClairecClairec 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_ScopeChloe_Scope Administrator Posts: 10,581 Scope community team
    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 :)
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  • ClairecClairec 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_ScopeRichard_Scope Administrator Posts: 2,328 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 - Cerebral Palsy

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  • ClairecClairec 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_ScopeChloe_Scope Administrator Posts: 10,581 Scope community team
    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 :)
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  • ClairecClairec Member Posts: 9 Listener
    Chloe_scope. Yes. She has splits she's been using them since she was I think around 3 as she first got a pair of boots to help her stand then splints. She has an appointment this Thursday with the vision team as she also has vision problems she received glasses a few months back. I am hoping that her consultant will be here also as now I have had time to think about everything I need to talk to someone about it all. 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,328 Scope community team
    I think it's a really good idea to talk it through with the consultant now that you have had the chance to think about everything @Clairec
    It is very difficult for anybody to predict how CP will affect somebody as they grow and get older. It's important to remember that you are doing all of the right things for your daughter!

    Scope
    Specialist Information Officer - Cerebral Palsy

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  • ClairecClairec Member Posts: 9 Listener
    Thank you all for your help I shall wait until Thursday amd hope consultant is there and see we're to go from there thank you. 
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,581 Scope community team
    I hope Thursday goes okay for you and your daughter @Clairec, like Richard has said, it's a great time to talk things through :)
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  • Chloe_ScopeChloe_Scope Administrator Posts: 10,581 Scope community team
    I hope today goes okay @Clairec :)
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  • ClairecClairec Member Posts: 9 Listener
    Thank you that's very kind we in the hospital waiting to be seen as we speak. 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,328 Scope community team
    Let us know how you get on.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • milliemolliemilliemollie Member Posts: 7 Listener
    Is Cerebral Palsy linked to vision problems?
    I started wearing glasses from the age of about 6. I used to have to go to clinic in the local town and they would issue me with patches to wear over my right eye,  as my left eye was lazy. 
    A few years later I was going to the opticians and was told there was no sight in my left eye and it would be pointless having lens in so my left lens was plain glass. For many years this was my glasses. When I changed to the local optician, he told me that there was some sight in my left eye,  not as good as my right but still some so now I have lens in both sides. 
    This year I had to have glasses for reading, so now I have two pairs, as the optician said that two separate  pairs would be better forcne than bifocals. 
  • ClairecClairec Member Posts: 9 Listener
    Hello milliemollie I had an appointment with my daughter with the vision team today and they told me that her vision problems are not with her eyes they are connected to her CP and the damage done to her brain she has lower visual field loss meaning when she looks straight ahead most of us will still be able to see below us anyway but she doesn't she has to put her head down to see. She also said wears glasses to. I don't know if that's any help to you xx
  • milliemolliemilliemollie Member Posts: 7 Listener
    Thank you,, I just saw your post and I wondered if my sight problems were linked to CP. All my family wear glasses but they can see better than me without them. Even large letters are still blurred but they can see them fine. When I took my driving test I really struggled to see the number plate as part of the test but I was passed. Wear my glasses from getting up to going to bed. I must admit I hated wearing them when I was younger and didn't wear the patch for school as I was bullied  for walking funny anI couldn't use my right hand and arm.  This would have been another ammunition. 
  • ClairecClairec Member Posts: 9 Listener
    I had no idea until today that her vision was caused by the CP at all but luckily they said it shouldn't get worse as she ages but she will need extra help. Have u been diagnosed with CP also? It might be worth speaking to your GP and asking them for help xx
  • milliemolliemilliemollie Member Posts: 7 Listener
    Yes apparently I was born with CP,, although my parents were never told,  I was born in 1975, my parents were told to put me in an institution as I wouldn't  amount  to much but my mum persevered and I eventually walked and talked, albeit later than others.
    I actually  started this post because of the pain and spasms I'm getting. I would just like a medical professional to explain everything..
    I've had blood tests for Rheumatoid Arthritis which came back abnormal but the Rheumatologist said that they  were wrong.
    When I was younger,  I was taken to physiotherapists who manipulated my leg which I still remember and I still remember  going to the hospital and the doctor used to whack me on my knee with a hammer. I think it must have been to test my reflexes. 
    I think when you are older you are left to your own devices. 
    I hope your daughter gets all the help and support she needs.



  • Richard_ScopeRichard_Scope Administrator Posts: 2,328 Scope community team
    Hi @Clairec
    Did you get to ask all of the questions that you wanted to?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,328 Scope community team
    Is Cerebral Palsy linked to vision problems?
    I started wearing glasses from the age of about 6. I used to have to go to clinic in the local town and they would issue me with patches to wear over my right eye,  as my left eye was lazy. 
    A few years later I was going to the opticians and was told there was no sight in my left eye and it would be pointless having lens in so my left lens was plain glass. For many years this was my glasses. When I changed to the local optician, he told me that there was some sight in my left eye,  not as good as my right but still some so now I have lens in both sides. 
    This year I had to have glasses for reading, so now I have two pairs, as the optician said that two separate  pairs would be better forcne than bifocals. 
    Hi @milliemollie

    Approximately 50% of children with cerebral palsy have some form of visual impairment. The severity of vision loss tends to increase with the severity of cerebral palsy. In general, visual impairments are thought to be more common in children with spastic cerebral palsy than those with athetoid or ataxic types

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
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