My story and being undiagnosed. — Scope | Disability forum
Find out how to let us know if you're concerned about another member's safety.

My story and being undiagnosed.

RacheleLeahSilvera
RacheleLeahSilvera Member Posts: 77 Courageous
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_Inactive
    Cher_Inactive Posts: 4,412

    Scope community team

    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 :)
    Online Community Co-ordinator

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

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
  • littleacorn
    littleacorn Member Posts: 255 Pioneering
    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 Member Posts: 15,260 Disability Gamechanger
    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 Member Posts: 77 Courageous
    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 Member Posts: 77 Courageous
    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 Member Posts: 77 Courageous
    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 Member Posts: 255 Pioneering
    Crazy but true. Hopefully you dont have to wait this long for your diagnosis.
  • RacheleLeahSilvera
    RacheleLeahSilvera Member Posts: 77 Courageous
    Crazy but true. Hopefully you dont have to wait this long for your diagnosis.
    Yeah

Brightness

Complete our feedback form and tell us how we can make the community better.