My story and being undiagnosed.
RacheleLeahSilvera
Scope 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
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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 soonOnline Community Co-ordinator
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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?
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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 -
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
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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?
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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
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Crazy but true. Hopefully you dont have to wait this long for your diagnosis.
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littleacorn said:Crazy but true. Hopefully you dont have to wait this long for your diagnosis.
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