My story and being undiagnosed.

RacheleLeahSilvera
RacheleLeahSilvera Scope Member Posts: 77 Contributor
edited October 2020 in Rare, invisible, & undiagnosed conditions
Hello everyone, My name is Rachele-Leah <moderator removed - personal details> and I am a 17 year old student who is originally from Luton,Bedfordshire but is currently living in Romford,Essex. I have been undiagnosed since the age of 8 but was born at 29 weeks and as a result was severely delayed in everything since birth. To this day medical professionals have been unable to find a specific cause to my present issues. I have an severe movement disorder.

Comments

  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,714 Championing
    edited October 2020
    Hello @RacheleLeahSilvera

    Thank you for telling us a bit more about you.  It must be frustrating to not have a firm cause for your issues.  What kind of symptoms do you experience?

    I'm not sure how helpful this is, but this Movement Disorders Society webpage gives links to various support groups.  Have you ever met anyone else with a similar condition?

    Also - how are you getting on with your studies?  Has your college provided any adjustments to your study to help you? 

    Take care and hopefully talk soon :)
  • littleacorn
    littleacorn Online Community Member Posts: 383 Empowering
    I am nearly 60 hears old and just got my diagnosis 5 years ago. I found it on the internet after years of strolling through so many websites. I then went to the GP to ask for a referral to a specific Consultant who I again found on the internet and yes I was right. Who diagnosed me I wonder?
  • janer1967
    janer1967 Online Community Member Posts: 21,922 Championing
    Hi again and thanks for sharing more about yourself and I know how important it is to get a diagnosis so you can get the right treatment. 

    I hope you get some help 
  • RacheleLeahSilvera
    RacheleLeahSilvera Scope Member Posts: 77 Contributor
    Cher_Scope said:
    Hello @RacheleLeahSilvera

    Thank you for telling us a bit more about you.  It must be frustrating to not have a firm cause for your issues.  What kind of symptoms do you experience?

    I'm not sure how helpful this is, but this Movement Disorders Society webpage gives links to various support groups.  Have you ever met anyone else with a similar condition?

    Also - how are you getting on with your studies?  Has your college provided any adjustments to your study to help you? 

    Take care and hopefully talk soon :)
    Hello, Your very welcome and it really is. Full body aches, tiredness, constant uncontrollable body movements, poor balance, bad eyesight, a limp as I walk and severe weakness on my right side and it is 24/7. Thankyou as this could be very useful to me and no I haven't but would love to one day. My studies are going well and yes I get support through the government as I have an EHCP plan.
  • RacheleLeahSilvera
    RacheleLeahSilvera Scope Member Posts: 77 Contributor
    littleacorn said:
    I am nearly 60 hears old and just got my diagnosis 5 years ago. I found it on the internet after years of strolling through so many websites. I then went to the GP to ask for a referral to a specific Consultant who I again found on the internet and yes I was right. Who diagnosed me I wonder?
    Wow, That is crazy
  • RacheleLeahSilvera
    RacheleLeahSilvera Scope Member Posts: 77 Contributor
    janer1967 said:
    Hi again and thanks for sharing more about yourself and I know how important it is to get a diagnosis so you can get the right treatment. 

    I hope you get some help 
    Hello, You are welcome and thankyou

  • littleacorn
    littleacorn Online Community Member Posts: 383 Empowering
    Crazy but true. Hopefully you dont have to wait this long for your diagnosis.
  • RacheleLeahSilvera
    RacheleLeahSilvera Scope Member Posts: 77 Contributor
    littleacorn said:
    Crazy but true. Hopefully you dont have to wait this long for your diagnosis.
    Yeah

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