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FND Confusion

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clwoodhouse2
clwoodhouse2 Community member Posts: 2 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
Hi , I was diagnosed with FND after 20years of investigations and  non effective treatments for conditions I was assumed to have, my symptoms never fitted fully to one condition. Before I was diagnosed all I wanted was to know what was wrong with me i felt like i was a lost cause, now i know what it is I am even more confused... The neurologist told me i had FND caused by being born with PFFD gave me a website to read and had referred me to a psychiatrist now I dont know what to feel or do..
I suffer daily with body shock/jerks I have read all the info on how to calm them but nothing works (most of it i have been doing for yrs) 

I dont even know what my question is I am just confused by it all 
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  • dolfrog
    dolfrog Community member Posts: 441 Pioneering
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    Hi @clwoodhouse2

    I have had a look at the Wikipedia
    "Functional Neurological symptom Disorder" article which describes various types of Functional Neurological Disorder (FND)
    and "Proximal Femoral Focal Deficiency (PFFD)" article 
    and i could not see a connection between the two issues. 
    I hope this helps
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  • LaughingLolly
    LaughingLolly Community member Posts: 100 Pioneering
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    @clwoodhouse2 welcome. Have you joined any FND support groups? There are loads on Facebook
    A laugh a day keeps the psychiatrist at bay. 
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  • Adrian_Scope
    Adrian_Scope Posts: 10,938 Scope online community team
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    Hello @clwoodhouse2 and a warm welcome to the community.
    I’m sorry it seems like you feel a bit lost. Have you tried https://www.fndaction.org.uk/?
    I think LaughingLolly’s suggestion of finding support groups would be really useful in terms of processing the new information and your feelings about it all.
    Please don’t hesitate to ask if there’s anything we can do to support you.
    Community Manager
    Scope
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
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    Welcome to the community @clwoodhouse2. I can understand why it all seems confusing now. Please do let us know if there is anything we can do to help.
    Scope

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  • underdiagnosed
    underdiagnosed Community member Posts: 30 Courageous
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    Hello. I was diagnosed FND in June after a lifetime of suffering. It confused me too especially as the neurologist said it didn't explain all of my symptoms. So I guess how you're feeling must be perfectly normal. I'm settling down with these feelings now. Hopefully yours may too given a little time.
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  • clwoodhouse2
    clwoodhouse2 Community member Posts: 2 Listener
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    Thank you all for the comments and links. I think knowing how I feel is normal at the start is very reassuring I am not going crazy, and that is so much of a relief 
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  • dolfrog
    dolfrog Community member Posts: 441 Pioneering
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    hi @underdiagnosed and @clwoodhouse2
    Having more than one set of issues which can co-exist, or be comorbid, can happen to anyone.
    The problem is finding adequately trained and qualified medical professionals who have an understanding of the all the possible symptoms and more importantly have some understanding of the possible causes of each symptom, and be able to make a set of referrals for asesments of the conditions that can cause the various symptoms. 
    In my case, some ignorant medical professionals consider dyslexia to be a condition when it in reality a shared symptom, and those who make money out of falsely diagnosing dyslexia as a condition and marketing programs, do not want ot recognise my underlying disability exists as it would put into question their ill informed and corrupt marketing of their preferred approach to these issues. I have auditory processing disorder which is a listening disability, and is the main underlying cause of dyslexia.

    Hopefully you will find a medical professional and or a multi discipline team who can help identify your real issues.
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