FND - A rare disease?

[Lady4]

Why is FND classed as a rare disease.A rare disease is classified as affected fewer than 2000 people within the general population (a bit vague).

Is FND not a disorder? Thoughts?

[Hidden]

A very good question pity we will never get the truth to it

[kev60]

Hi, never heard this about FND (functional neurological disorder) and as from what I understand from the neurologist it’s the second most diagnosed condition in neurology after migraine. I and my wife learnt a lot from talks given by neurology department at kings run by St George’s, St Thomas and Kings hospital. Although there is still a lot to do and learn there are more and more trials being developed and I have been on a few. So the medics are learning all the time. Good luck hope you find what you’re looking for. Kevin

[Lady4 in reply to kev60]

Thanks Kevin, someone mentioned it was on the register and sure enough it was:rarediseases.org/rare-disea...

And the sadest part. The Government made a promise:

gov.uk/government/publicati...

But the treatment, referrals and knowledge of some specialists is debatable and the timeline and being passed from pillar to post just adds stress and anxiety and can create more symptoms, that could be avoided in many cases.

Plus I read a very lengthy article about links between Long Covid and FND and the fact that Specialists in this field are keen to disassociate FND is because they no many sufferers are "labelled" and don't get the help they need.

[210272]

In answer to your second point my thoughts are that I do not think that FND should be in DSM and I prefer the term 'condition' to 'disorder'. However apparently the 'disorder' term was chosen for FND because it reflects the severity of the symptoms and was a patient preference at the time.

The measurement of rare conditions varies from country to country and region to region. In the UK it is thought that 1 in 17 people will have a rare condition at some point in our lives but in America it's 1 in 12, I think. Also HEALX have demonstrated that there are over 10K rare conditions (previous estimates were usually in the region of 6K - 8K) so the percentage of people with one (or more) may change, over time. The incidence of FND varies from paper to paper so it is hard to tell if it is rare or not but it is mentioned in GARD so I assume it's still thought to be rare by the powers that be.

I am still not OK with the likes of Stone vacuuming up all the 'dizzy' people and people with brain fog - probably without their knowledge and almost certainly without their consent - to justify the claim that 16% of referrals to neurology are for FND. The investigative journalist, David Tuller, thinks that (based on papers from Stone and co) the 16% deal is inflated and has challenged this with some success. So I am glad I could afford to donate a small amount to his November Crowdfunding which ends in about 6 days. It's easy to find if you're on Facebook and sharing helps, even if you can't afford to donate. Edited to add the link:

crowdfund.berkeley.edu/proj...

[CRPSplus]

Ambiguity. All professions love it. The useful bush of uncertainty to hide behind when needed instead of simply saying "I don't know".

CRPS is a 'syndrome'. Really?!! Tell that to Dr Andreas Goebel or Victoria Abbot-Fleming MBE (Burning Nights charity).

No apologies for the cynicism, sure you'll understand :-}

[Pault1]

disease

noun

a disorder of structure or function in a human, animal, or plant, especially one that has a known cause and a distinctive group of symptoms, signs, or anatomical changes.

"bacterial meningitis is quite a rare disease"

[Corgi_Gal]

Commonly diagnosed because doctors are too lazy or insurance companies are too cheap to keep looking for answers when they don't find an obvious cause for neurological symptoms.

In reality, true FND *is* rare. I just think a ton of people are being mislabeled.

I would not call it a disease though. Because diseases have a known cause. 😞

[Lady4 in reply to Corgi_Gal]

If they dealt with referrals early on or bothered to refer a lot of sufferers would probably be back on the road to recovery.

[Pault1]

FND

The incidence is between 4 and 12 per 100 000,

ncbi.nlm.nih.gov/pmc/articl...

[Lady4]

Thanks Paul, that paper is 5 years ago, I wonder what the current stats are.

[Dieselfive in reply to Lady4]

I totally agree and wonder also what the statistics are. I can’t even find a doctor that has felt with this common, rear disease.