Does anyone have a FND diagnosis?

[grayhairdontcare]

Dp has just had this diagnosed and I've honestly never heard of it.
Was wondering if anyone has this and has any advice

My kids childminder was diagnosed last summer. It came on out of absolute no where (although they think it may have been triggered as a result of a bad reaction to general anaesthetic from a surgery months earlier). We went on holiday and I came home to a load of messages from her about how she was in hospital. Unfortunately she had to stop work because she has ‘attacks’ (not sure of the correct terminology) with absolutely no warning and can no longer drive. For her it’s loss of sensation in her limbs down one side.

I still see her, she was looking after my girls for over 6 years and was truly like a member of the family. Generally she is doing well but tires easily and now uses a mobility scooter as a result. She said the worst part is the uncertainty, to her it’s not so much a diagnosis they’ve just ruled a bunch of other stuff out. But she is going longer and longer between any issues so is hopeful that she may go back to normal, apparently it can disappear as quickly as it appeared.

Sure someone with first hand experience will be able to answer some more practical questions for you soon, but all the best to you both.

I have fnd fncd it is a very random condition but yes you can go a long time with out a attack it can b helpped if they know the source or reason but it is not necessary just trauma that courses the condition there is many facebook groups and websites now that are available and give u more hope

My wife has FND - she was diagnosed 3 years ago and is still struggling with different problems cropping up every couple of weeks. Unfortunately it took years to get the diagnosis and a recovery isn’t likely.

We’ve got a good team of clinicians and it seems as if every day is a different therapy but we’re throwing everything possible at this to try and stabilise her.

Her current team involves - neurophysiotherapist, psychologist (who specialises in FND), neurologist, physiotherapist (for hydrotherapy), occupational therapist, respiratory therapist, pain specialist and speech therapist.

FND is a lot and it’s taken a long time to get used to the diagnosis. It was described to us by a neurologist as “the love child of alzheimers, multiple sclerosis and Parkinson’s disease” as it mimics all three without the physical markers necessary for a diagnosis.

Is your GP helpful? Ours is in as much as she doesn’t know anything about FND so writes all the referrals we ask for but it means we have to do a lot of the donkey work.

I have had a diagnosis this week. Thankfully I have no movement issues or cognitive issues at all. I had a head injury/mikd concussion which brought about a range of strange neurological symptoms and caused huge anxiety. Now that I have had sinister neurological issues ruled out, am on anxiety medication and have had a refferal to a Neuropsychologist I hope to get well but this has come as a bolt out of the blue and put my previously happy/active life very much on hold.

This website is a good first source of info-
https://neurosymptoms.org/en/
It's run by a consultant neurologist in Scotland who specialises in FND. It's very easy to digest site, for such a complex condition.

Please please do lots of your own research into symptoms. Fnd is the new name for conversion disorder. Doctors have wrapped it up in a bow to make it more palatable, the old ‘software not hardware’ line type thing. Do you feel their mental health is being converted into physical symptoms? If not do tons of research and seek further testing, you’ll likely have to go private. I bet you anything in 10 or 20 years time, many people diagnosed now with FND will find out they have a different diagnosis. Just because their MRI and basic nhs tests came back clear doesn’t mean there isn’t a ‘hardware’ problem. Even a couple of famous FND tiktokers have just had their diagnosis over turned.

This is training for staff on FND and shows how a lot of medical people see it. Please don’t take this attitude to your loved one though, they are unwell and do NOT need this attitude!!! https://fndaustralia.com.au/resources/FND-Learning-guide-for-nurses.pdf

It just shows how differently the illness is sold to patients and between medics. There was an email conversation that got leaked from between neurologists about how it’s mental health but you must not say that as you’ll lose their trust.

Please try and seek help to find what’s really wrong with your DP if you don’t feel he has any MH problems. It’s scary how long peoples neurological problems are left undiagnosed, and just treated with a bit of physio, CBT and goal making.

I have FND. Very jealous of PP's wife with a decent care team, in my area neurophysio "is not commissioned" to treat FND, so despite my neuro being able to tell me what treatment I should be getting, all he can actually do is rerefer me to rheumatology to see if they'll let me do a pain clinic, and write "have told patient to engage with mental health services". What mental health services exactly remains to be seen.

I would really recommend the FND Hope charity https://fndhope.org/ . As well as advocating for better care, they run a whole bunch of free online support groups, from dance to yoga to art journaling (the last is my favourite) where you can chat to other people in similar situations and do some activities at your own pace.

My 18 year old dd has just been diagnosed with this. She suffers with MH and randomly started having seizures around 18 months ago. At first she was having up to 20 a day, now they're few and far between

I've just had a more experienced Neurologist disagree with my FND diagnosis. He said in 25 year it's rare to find a true case of it. I've got more tests now ...seems all to easy to be given this diagnosis when they are unsure what's causing symptoms.

It’s costing more each week in therapies than we pay on our rent. We’re rapidly running out of money and won’t be able to keep going much longer.

We’re not in the UK and it’s very difficult to get any sort of help through the public health system.

There are some studies being done with functional MRIs which look interesting so we’re trying to get onto one of those.

Ah okay, I'm sorry. I mistakenly assumed you'd just won the NHS postcode lottery. Please ignore my misplaced jealousy!
I actually already pay for fortnightly psychotherapy, but that uses up all of my PIP so I can't afford physio etc as well.

And yet so many people are being diagnosed. It really scares me that so many conditions are being written off as fnd as neuros are just reaching for the fnd label when some tests are clear