Undiagnosed and rare conditions
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My story and being undiagnosed.

RacheleLeahSilveraRacheleLeahSilvera Member Posts: 69 Connected
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.

Replies

  • Cher_ScopeCher_Scope Posts: 3,304

    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 :)
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  • littleacornlittleacorn Member Posts: 152 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?
  • janer1967janer1967 Member Posts: 9,068 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 
  • RacheleLeahSilveraRacheleLeahSilvera Member Posts: 69 Connected
    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.
  • RacheleLeahSilveraRacheleLeahSilvera Member Posts: 69 Connected
    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
  • RacheleLeahSilveraRacheleLeahSilvera Member Posts: 69 Connected
    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

  • littleacornlittleacorn Member Posts: 152 Pioneering
    Crazy but true. Hopefully you dont have to wait this long for your diagnosis.
  • RacheleLeahSilveraRacheleLeahSilvera Member Posts: 69 Connected
    Crazy but true. Hopefully you dont have to wait this long for your diagnosis.
    Yeah
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