Looking for advice

KizzyG
KizzyG Community Member Posts: 3 Listener
in Rare, invisible, & undiagnosed conditions

Hi all I’m in my mid 20s and currently seeking a Cerebral Palsy diagnosis. I was born 3 months early weighing 2lbs, I couldn’t walk til I was 2.5 years old, had abnormal posture and exotropia. For as long as I can remember I’ve had tremors, back pain and terrible coordination and balance.

I was told by my parents that sometime shortly after I was born student nurses squished my head too hard and gave me some form of brain injury. I’m struggling to get access to my birth records and I can’t find any other documentation of this elsewhere.

I’ve been to multiple doctors who either tell me that I just have an essential tremor and just to stretch and come back later in regards to the back pain. I’m going to physiotherapy privately as the back pain has just been too much to cope with.

Is this worth pushing further for? I’m so exhausted and I feel like I’m making it up or going down the wrong path and it’s so isolating not knowing what’s causing all this. It’s getting to the point where I fear I might have to quit my job due to pain and being so slow and uncoordinated.

Comments

  • Mary_Scope
    Mary_Scope Posts: 4,888 Scope Online Community Children and Family Specialists

    Hi @KizzyG and a warm welcome to the community from me!

    Thank you for telling us a little about yourself. It sounds like you have been through a lot, how are finding the physio? Have you been able to find anything to help the pain?

    There is a CP network here on the community and CP specialists @Lucy_Scope @SaraC_Scope and @Richard_Scope who offer specialist advice, information and support to people with CP and their families😊

    It's lovely to have you here and I hope you enjoy your time on the community!

  • KizzyG
    KizzyG Community Member Posts: 3 Listener

    Hi Mary! Thank you for the welcome and physio has reduced a lot of the pain I’m in and helping with range of movement I’m finding it really helpful so far! Thank you for the recommendation I shall definitely check it out!

  • SaraC_Scope
    SaraC_Scope CP Network, Scope Posts: 429 Pioneering

    Hi @KizzyG

    I'm Sara one of the Cerebral Palsy specialists in the CP Network.

    It sounds like you are having to deal with so much, physically and emotionally without much medical guidance or support. I understand how draining this can be. Do you have friends and family you can speak to about how you're feeling?

    I would recommend speaking to your GP again, explaining what your parents have told you, along with a detailed explanation of your symptoms. It might help to take a trusted friend or family member to the appointment. Having this person by your side can boost your confidence in speaking up. Once you have given all the information, ask for a referral to an adult neuro physiotherapist where they can carry out a full assessment to help you understand your medical circumstances.

    We have the Cerebral Palsy Network at Scope which you are welcome to join. We host monthly online Zoom meetings. It's a space to connect with likeminded people who understand. Once you are a member you have access to a variety of resources and information.

    If you would like a conversation please contact our team.

    Best wishes.

  • KizzyG
    KizzyG Community Member Posts: 3 Listener

    hi @SaraC_Scope ! Thank you very much for the advice, I have a good support system and am sure someone would come with me for a second opinion, thank you very much

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