I just found out I have Spina Bifida Oculta. Does anyone else find it hard to organise themselves? — Scope | Disability forum
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I just found out I have Spina Bifida Oculta. Does anyone else find it hard to organise themselves?

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LordRogan
LordRogan Community member Posts: 1 Listener
edited October 2021 in Aids, adaptations, and equipment
I just found out I have Spina Bifida Oculta. No particular hardships in life except for I have always found it hard to organise myself. Not just that I am bad at it but that it makes me dizzy, panicked, confused. Much how people describe dyslexia makes one feel. Could be a confirmation bias but would be interested to know if there was some pathology to this curse! Many thanks and stay well all. Lord Rogan
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi and welcome to the community Feel free to join in or ask any questions 

    Sorry I don't know anything about this but I'm sure others will be able to help 
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  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
    edited July 2021
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    Hi @lordR - & welcome to the community. Our family is affected by a neurological problem (Chiari 1 Malformation) in which some can have a tethered (spinal) cord. Sometimes this can be associated with Spina Bifida Occulta, so I know something of these conditions. I attended a virtual conference last year about  Chiari 1 Malformation, & there was a very informative talk given, which I hope you may find helpful re: Spina Bifida Occulta. Please see: (skip the ads!)
    With acknowledgement to the American Syringomelia & Chiari Alliance Project, & their virtual conference July 2020. Please see: https://www.youtube.com/watch?time_continue=5&v=pcXD0iFqPQs&feature=emb_title
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  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    Welcome to the community @LordRogan :) Just to let you know, I've changed the title of your post slightly to make your comment about the organisation problem more visible.

    To be honest, I'm not sure either, and I'm not a medical professional so I wouldn't want to advise. Have you spoken to your doctor about the problems you have with organisation? These kinds of difficulties can have many causes. As you say, learning difficulties such as dyslexia can present in this way, as can neurological disorders like ADHD, and mental illnesses such as depression and anxiety, along with many other conditions too! I'd definitely encourage you to visit your GP if you feel as though this is impacting on your life
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