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 😢
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
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/
Replies
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 😢
Scope community team
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?
Talk to our chatbot and give us feedback on 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
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