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

System

This discussion was created from comments split from: FND.

cez39

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_Scope

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?

janer1967

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 

underdiagnosed

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

hdeakin

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