Neurological conditions
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Hello, my name is Cassie24

Cassie24Cassie24 Member Posts: 1 Listener
edited August 11 in Neurological conditions
Hi All, 

I was diagnosed with FND - NEAD 18 months ago. I have convulsive seizures, mobility/balance issues, fatigue, back, hip, neck pain, tremors , migraines, light sensitivity. I am 27 and married to an amazing supportive man, unfortunately the rapid worsening of my seizures has meant I have had to give up working. I’m glad to be part of this group as, it’s hard to find other people that understand what your up against and just how exhausting FND can be. 

Replies

  • Cher_ScopeCher_Scope Administrator Posts: 1,359 Pioneering
    Hi @Cassie24 and welcome to Scope's online community :) I am glad you found us.

    Functional Neurological Disorder (FND) sounds like a lot to have to handle.  You might find it useful looking on our Neurological conditions board here > https://community.scope.org.uk/categories/neurological-conditions  That's where our members with similar conditions share their stories and ask questions.  

    I am so happy you have a supportive husband, that really can help make a difference and I'm sorry you have had to give up work too but that sounds like completely the right decision given the impact of your FND.

    How are you today?  Feel free to have a nosey around the board and make yourself at home!
    Online Community Co-ordinator

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  • chiariedschiarieds Community champion Posts: 4,603 Disability Gamechanger
    Hi @Cassie24 - Welcome to the community, & thank you for joining. FND-NEAD must be difficult to cope with, & we have had members with the same disorder. You will find a lot of understanding here as other members have varying neurological problems too.
    I don't know if you've come across the following site, but posting 'just in case.' Please see:
    https://www.fndaction.org.uk/
    Please look around the forum, pop into our virtual 'Coffee lounge,' & chat here any time. :)



  • steve51steve51 Community champion Posts: 7,175 Disability Gamechanger
    Hi @Cassie24

    Good Afternoon & Welcome 😃

    I am one of the Community Champion’s here at Scope😃

    Yes I also have “Neurological Problems”

    I also go through the same problem’s on a daily basis even with all of meds at max.

    @steve51
  • janer1967janer1967 Community champion Posts: 4,518 Disability Gamechanger
    Hi @Cassie24 Welcome to the community glad you have joined us

    Have a look around and feel free to join in any discussions or if there is anything we can help you with then just ask

    I LOOK FORWARD TO SEEING YOU AROUND
  • Tori_ScopeTori_Scope Administrator Posts: 1,277 Pioneering
    Hi @Cassie24! As Cherylyn said, you might like to have a look around the Neurological Conditions category on the community. I've moved your post there so that more of our members will be able to find and respond to your post. You've come to the right place to find others who might be able to relate to what you're going through, and we're glad to have you here :) 
    Online Community Coordinator

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  • Chloe_ScopeChloe_Scope Administrator Posts: 10,560 Scope community team
    Welcome to the community @Cassie24, I'm really glad you found us. Please have a look around and please let us know if there is anything we can do to help. :)
    Community Partner
    Scope

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  • underdiagnosedunderdiagnosed Member Posts: 24 Courageous
    Hi @Cassie24, I am also diagnosed with FND among other things. My symptoms include fatigue, mobility/balance issues, headaches, light sensitivity, tinnitus, left sided weakness. I also have cardiac symptoms and occasional sudden breathlessness which are not explained by FND. I had to give up work around 12 years ago. I was initially diagnosed with a rare heart condition and idiopathic hypersomnolence (the opposite of insomnia of unknown cause). They attempted to treat me with amphetamines but I had to stop taking them due to cardiac problems, which appear not to be cardiac in origin and largely remain a mystery. My fatigue is worsened by sleep fragmentation, which they are now trying to treat with an epilepsy drug despite not understanding what exactly it is. It helps a little, but I still wake up 5 or 6 times a night, sometimes more. I'm so exhausted even sitting up straight for a prolonged period can cause tiredness. If someone takes me out (I use a wheelchair) I generally tire within an hour or two. If I try to push through the tiredness, it can trigger more serious symptoms. I believe there are a few people within the community with FND diagnoses. I find knitting helps when my condition allows. Its relaxing, therapeutic and you can knit for a good cause. I generally find rest to be the best medicine, exercise makes me worse. Hope this helps.
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