Neurological conditions
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Hello, my name is Cassie24

Cassie24Cassie24 Member Posts: 1 Listener
edited August 2020 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 Posts: 4,029

    Scope community team

    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 Co-Production Group Posts: 9,141 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 Member 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 Member Posts: 11,176 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 Posts: 5,019

    Scope community team

    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, she/her

    Want to give us feedback? Complete our feedback form now.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    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. :)
    Scope

  • underdiagnosedunderdiagnosed Member Posts: 27 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.
  • diane01diane01 Member Posts: 45 Connected
    Really bad episode this morning couldnt get out of bed for shaking & hands went num movement was horrible & cant seem to get cool i seem to be over heated & been avin bad stomachache pains not sure if stomacache is part of this fnd condition but any1 else suffering with sweating or stomach issues?.
  • janer1967janer1967 Member Posts: 11,176 Disability Gamechanger
    Hi welcome back 

    Sorry you are feeling bad and hope you get something sorted 
  • diane01diane01 Member Posts: 45 Connected
    @janer1967
    Thanks chick Nearly rang 999 was that scared about everything just cried since it happened feeling so down wish i knew wot to do myself been sick since really feel very rank hope tomorrow is a better day 
  • janer1967janer1967 Member Posts: 11,176 Disability Gamechanger
    Hi 

    Why dont you give 111 a ring they will advise what you need to do 

    You need to do something and they will help.  Please dont just do nothing 

    Let me know I'm concerned for you 
  • AlisonNettyAlisonNetty Member Posts: 138 Pioneering
    Hello and welcome. My name is Alison. Pleased to meet you. 
  • diane01diane01 Member Posts: 45 Connected
    @janer1967
    I did ring them just waiting on them to ring me back but the women was going on you've been sick take a covid test i guess they dont understand that there is other disorders or illness to deal with rather that isnt covid related think i kno what they'l say ring the ur gp on monday morning & ring mental health team because i've become emotional i'm just in shock i never kno what to expect but thank you for ur concern just rang my mum cried to her never really been close to my mum b4 but only support i've got 
    Thanks again 
  • diane01diane01 Member Posts: 45 Connected
    @AlisonNetty
    Hi alison i'm a newbie to this site but thank u for the warm & friendly welcome 
  • janer1967janer1967 Member Posts: 11,176 Disability Gamechanger
    If you dont get any luck with 111 and still feel you need medical advice before monday then get your self to a&e 
  • diane01diane01 Member Posts: 45 Connected
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