Hi, my name is Rhiannon I'm 23 and Have a condition called Functional neurological disorder

RhiannonThompson96
RhiannonThompson96 Online Community Member Posts: 1 Listener
edited October 2021 in Rare, invisible, & undiagnosed conditions
Anyone else struggle with FND? 

Comments

  • thespiceman
    thespiceman Online Community Member Posts: 6,283 Championing
    Hello @RhiannonThompson96   Pleased to meet you.

    Thank you for joining and sharing.

    I am one of the team of community champions.  We advise, guide and help members of the community.

    Sorry to hear what your going through.

    I hope this might help you.

    https://www.fndaction.org.uk.

    Please have a look around our website.  Please ask anything we are supportive.

    Please if I can help with anything please get in touch.

    Pleasure to meet you.

    Please take care.

    @thespiceman

  • pollyanna1052
    pollyanna1052 Online Community Member Posts: 2,015 Championing
    Hi, I have read a few posts on here from those who have FND. Have a look at coffee lounge page.
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Welcome to the community @RhiannonThompson96, sorry to hear you are struggling with this. I hope the website @thespiceman has provided as this has a lot of useful information.

    The community is open to anyone so you are very welcome here. :)
  • Clarissa1
    Clarissa1 Online Community Member Posts: 34 Contributor
    Pleased to meet you @RhiannonThompson96.
    I also have FND, it is still a grey area even though a lot is being done to bring more awareness about it. I have mobility problems, and non epileptic seizures.. How are you now the Christmas decorations are down ? Sorry I didn't post earlier .. ?

  • Jazkier
    Jazkier Online Community Member Posts: 2 Listener
    Hi, I have FND too :smile: I was diagnosed at 15 and am now 21. I am part of a couple of online support groups and one that organises local meet ups.
  • Adrian_Scope
    Adrian_Scope Posts: 14,323 Online Community Programme Lead
    Glad you found us here @Jazkier. Welcome to the community. :smile:
  • sam_tex20
    sam_tex20 Online Community Member Posts: 8 Contributor
    Hey i also have FND! I was diognosed 8 months ago. at age 17 (I'm now 18)
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Welcome to the community @sam_tex20

    How have you found FND? I know it can sometimes take a while to get a diagnosis.
  • sam_tex20
    sam_tex20 Online Community Member Posts: 8 Contributor
    @Chloe_Scope it took 7 years to get a diagnoses. It's been a Rough journey, lots of accusations of me faking and lots of name calling all happening from teachers who never believed me which sucked. once I moved to college tho they where much more accepting and understanding and willing to help support me, I got my diagnoses in September of chronic migraine syndrome(causes extreme vertigo and Complete/partial vision loss multiple times a week) chronic daily headache syndrome( when I don't have a migraine I always have a headache) and FND/NEAD- which was a major break through in the way i now know it wasn't all just fake and in my head. I'm now waiting to see a neuro-phsycologist who i was told would be a 2 year wait which has now been extended to a 3 year wait due to the Covid-19 pandemic. so now we know whats wrong we have started a treatment plan to try help to control and manage symptoms and flair ups.
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    edited May 2020
    That must have been so hurtful when you weren't believed @sam_tex20! I imagine it was a real relief to have some answers. FND is very real and I'm glad the college is more accepting.

    Have you heard of FND Hope? They have loads of resources that can help.

Categories