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  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    @lozzer25 you don't have to leave the community. What was the actually said to you about the MRI results? An MRI scan can often assist with identifying areas of brain damage but not in every case. There is no stand-alone test for cerebral palsy,

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • lozzer25
    lozzer25 Community member Posts: 89 Courageous
    Just said mri was normal nothing else another letter to leave me in limbo I feel like I've bitching and griping about nothing over the years as there is nothing wrong with my brain now I have to wean myself off baclofen which I've been taken for 6 years x
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    You are a valued member of our community and I don't think you have been griping over nothing. Your symptoms have a very real effect on your day to day life. It may or may not be CP but the medical professionals still have a duty to try to find a diagnosis for you. We will be here to support you as and when you need.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • lozzer25
    lozzer25 Community member Posts: 89 Courageous
    Thank you richard x
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    :)
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @lozzer25, like @Richard_Scope has said, there is no true MRI pattern to confirm cerebral palsy. This means that people can have a clear MRI scan and still have CP. Your symptoms are not in your head and you are a very valuable part of the community. Has the Baclofen been helping your symptoms. I really would seek medical advice about how to come off it if this is what you choose to do.
    Scope

  • lozzer25
    lozzer25 Community member Posts: 89 Courageous
    Yes it has its give me the mobility back in my hands and my tremors are only a small dither before started baclofen I couldn't carry cup before with my hands as they would shake having spasms when I try to cut vegetables up, I still get them now but there 99% better than what they were the baclofen has really helped me there I will seek advice from a doctor about the baclofen just wish I had a definitive answer to what is wrong yes or no that is all I want to know xx
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    I'm really glad the baclofen has been able to help you so much! I know a definitive answer is what you wanted and I can definitely relate to this with my own experiences. Are you due any other appointments which might allow you to get answers?
    Scope

  • lozzer25
    lozzer25 Community member Posts: 89 Courageous
    No I have asked the receptionist to ask the neurologist to write a detailed report of what the findings were x
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    I hope you are not waiting too long for this then :)
    Scope

  • lozzer25
    lozzer25 Community member Posts: 89 Courageous
    Thank you Chloe I don't believe it's physcosomatic i have had the symptoms since being a little girl xx
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    No problem at all :)
    Scope

  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    edited June 2019
    lozzer25 said:
    Yes it has its give me the mobility back in my hands and my tremors are only a small dither before started baclofen I couldn't carry cup before with my hands as they would shake having spasms when I try to cut vegetables up, I still get them now but there 99% better than what they were the baclofen has really helped me there I will seek advice from a doctor about the baclofen just wish I had a definitive answer to what is wrong yes or no that is all I want to know xx
    Good morning @lozzer25
    How are things today? 
    I thought about what you posted above and it reminded me of another member that I have working with over the last month. They have been trying to help their son get a diagnosis of CP for the last 5 years. He has eventually been diagnosed with FND (Functional Neurological Disorder). FND, sometimes referred to as Functional Movement Disorder as well, presents similarly to a lot of other impairments such as CP and as a result can be very difficult to diagnose. Here is some information about it: Neurosymptoms.org
    I'm not medically trained, so please discuss this with your G.P. and consultant. I hope you get answers soon.
    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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  • lozzer25
    lozzer25 Community member Posts: 89 Courageous
    Thank you richard x

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