Neurological conditions
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Hi, I'm cez39! Trying to find information and support for FND

SystemSystem Posts: 545

Scope community team

edited July 3 in Neurological conditions
This discussion was created from comments split from: FND.

Replies

  • cez39cez39 Member Posts: 1 Listener
    Hi everyone 

    My name is cerrie and I was diagnosed with fnd 2 days ago 
    With a year long investigation to full body paralysis headache/miagrains
    Tic tremors and then full on convulsions that look like seziures but was fully awake aware and able to talk thro them 
     
    So iam here trying to find out more information /support
     
    My symptoms are not every day 
    Can go weeks without any tremors tics ect 
    But can have headaches pins and needles every couple of days 
    Most posts I've seen ppl have this daily if iam unable to try and retain my brain soon will it become daily?
     Iam not sure what to do where to go ive had over a month off work and not sure if I should return until I have this more controlled iam confused 😢

  • Ross_ScopeRoss_Scope Posts: 4,114

    Scope community team

    Hello @cez39

    Welcome to the community, good to see you join us, how are you? 

    How are you coping with your diagnosis? How are you feeling about it? 

    I have no personal experience of FND myself, but can I ask if you have spoken about the work issue with your GP? What have they advised?
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  • janer1967janer1967 Member Posts: 11,160 Disability Gamechanger
    Hi and welcome to the community 

    I am sorry to hear about your situation 

    With regards to returning to work you should seek your gp advice 

    If you do return I would arrange a meeting with your manager or hr to make sure you get their support 

    It may be worth getting a referral to oh so they can assess you and they will make recommendations for any reasonable adjustments you may require 
  • underdiagnosedunderdiagnosed Member Posts: 27 Courageous
    hi cerrie, sorry to hear about your fnd. you could try www.fndhope.org for information. i believe there is a/are some fnd facebook group(s) too. i have fnd too, but i have other symptoms and conditions as well which are not explained by fnd so i'm probably not the best person to advise you. for me, my condition gradually deteriorates over time, but that could be due to the other conditions so i'm afraid i don't know. i find that rest helps. unfortunately any support through the nhs for fnd depends on where you live and is not available in some areas, but it could be worth asking. i hope this helps
  • hdeakinhdeakin Member Posts: 126 Pioneering
    Hi @cez39 welcome to the community. Sorry to hear it has been a long journey to get a diagnosis. Maybe Access to work could help regarding going back to work as well as your GP, OT and any specialists. Try not to push yourself to hard though.
    I have FND as well as other conditions I write a blog here are a couple of posts that maybe helpful if you are interested in reading them.
    One on pacing:
     https://hannahshope.co.uk/the-art-of-pacing/

    One on FND:
    https://hannahshope.co.uk/what-is-fnd/

    One on the Wolfson unit who have an FND programme I have been on:
    https://hannahshope.co.uk/my-stay-at-wolfson-unit/

    A good neurologist who understands really helps, Proff Mark Edwards at St Georges is lovely.
    Best wishes,
    Hannah
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