Functional Neurological Disorder (FND) - articles, social media and discussion

Welcome @Gradzy i hopebyou find this forum enlightning and fun. I am in the same boat as you but i have lost all faith in medicine. It goes back about 3 years ago i was feeling veey bad neuropathy symptoms and woke up and discovered i was paralysed from the arms down. To cut a long story short they diagnosed me with fnd even though i had a spinal tap with a elevated level of protien which in my mind is a sign of inflamation and damage. The worst part is no one told me of the diagnosis i found out by reading the report and secondly either they did not read or totally ignored the csf test.

 

One thing I've learned over the many years since my health nightmare started is that it is wise to ask to for copies of all test results.

Insist that you are given a copy, examine them for yourselves, research online how to interpret them and how to check for established reference levels. Because your GP or consultant can make a judgement that certain things aren't significant when they are, often because they're low but 'in range' or even too high/low but are dismissed. They can also just interpret them badly, perhaps because they've misunderstood your symptoms.

This doesn't relate to the neurological diagnosis but I had another major diagnosis during this same nightmarish saga (that is ongoing). When I received this diagnosis it triggered a memory that I had asked for this particular thing to be checked for roughly 4 years prior. I went into my papers and found that test result, only to discover to my anger that it was 'within range' but definitely on the low end of the normal range. I was angry and resentful of this discovery because my GP had merely told that the result was normal and I naturally dismissed that condition as the explanation for my symptoms.

During the intervening almost 4 years my relevant symptoms had grown and grown and by the time I was diagnosed I had dropped well below even the NHS's healthy range. Now, I understand that according to the NHS guidelines my GP was relying on, he didn't consider me out of range and 'sick'. Now there is a criticism to be made here of these reference levels and how they are misleading they might be because of different people become sick at different levels within the established reference range, but I'm trying to leave that to one side for now.

But it seems to be me that if I am at the low end of a wide normal range and I am complaining of relevant symptoms that it would be sensible to alert me to keep an eye on my symptoms or at least to advise me to come back for a follow-up test in say 12 months, whilst reassuring me that the result is fine if they insist. Monitoring would have allowed him to see if my levels had stayed the same, or moved down into the red zone.

Obviously I know now that at some point during those two tests, 4 years apart, my levels of this marker had started falling (perhaps had been falling already for years) and continued falling perhaps gradually, because I had also felt a gradual increase in symptoms over that time.

So in my view there was a failure there to alert me or to schedule a review to monitor for a possible health problem, all because of this obsession with 'ranges' and the sense that patients aren't entitled to a fuller picture of what is happening to their body. If I had been told that I was low-normal at that point then I would have either asked for yearly monitoring by the NHS or I would have happily sought private blood tests to monitor the situation myself via somewhere like Medichecks.

In which case - given the large decline -I would been able to catch myself dropping below the reference level and been diagnosed and treated earlier or much earlier. It's just very frustrating to realise that this information was sitting there right in my printed test results, which I hadn't examined at the time because i trusted the GP when he said they were normal.

I was made to suffer with these symptoms longer than I needed to, possibly years longer, because of this rigid focus on reference levels and not wanting to give patients full context to their results. It's often just 'fine' or 'bad' when it comes to blood markers with the NHS, and sometimes you can be on the low end or right at the boundary to 'deficient' and not be told.

Because of this experience, others like it, a long history of having my symptoms either explicitly or implicitly dismissed as being the product of my mental health (long, long before FND was mentioned by neuro) and a variety of examples of medics clearly doing their work in a sloppy manner (not following guidelines, not doing appropriate tests, not asking the right questions, ignoring symptoms and more) I have sadly learnt to not automatically trust what any medical professional says to me.

 

Sadly I might still have years of testing ahead of me to find out the underlying cause of my diagnosis and possibly a struggle to get that testing done. There is also a strong possibility that the underlying cause may not be found, this disease has a worryingly high proportion of cases that are declared idiopathic.

It also the case that the available treatments only treat some symptoms and with variable but not great effectiveness, unless you can identify and treat certain underlying causes. I may well be suffering these symptoms for the rest of my life, which paints out a tough, dark road ahead.

It's a lot better understood than ME, but it's still not well understood and treatments are limited and poor.

But, yes, it is a huge relief that I can at least finally, after years and years, prove that I have an organic disease that explains many of my symptoms. I can prove to friends, family and potential employers that I'm not crazy. I worried for many long year that nobody, including my long term partner, truly believed me.

It is hard to avoid that kind of paranoia creeping in when you have endless GP appointments, consultations, trips to hospitals, tests over the course of multiple years and there are no answers. Plus constant scepticism from the medical profession.

You worry that you really are crazy, and that's tough.

 

ah yes the ubiquitous 'idiopathic'. IYAM this often stems from lack of curiosity or resources to do sufficient exploratory testing, or even discussion.

I can never quite get over the fact that the word starts with 'idio'... just sayin.

I think that is the toughest thing of all for some of us, certainly it is for me.

 

I am getting brain fog so what did you get finally diagnosed with.

I had a couple of tests that where unusual tje first one was a very low vitamin d level and the second was a borderline hyperthyroid test.

Medicine these days is so biased toward conversion disorder / fnd these days its hard for medicine to break free.

I once had a appointment with a neuro once and tried to explain the spinal tap test to him and hi reply was "i wasnt there!" and tried to pin it to a death but my symptoms started much earlier. When in the apppointment and comming out i could work out many neuros and doctors are biased.

 

I keep test results on a spreadsheet which I have shared with GP.
They see tests in isolation, they don't necessarily check unless there's an issue .There' s a reliance on a test result as being definitive rather than being looked at in combination with symptoms.
No knowledge re statistical spread , or of some test being non parametric in distribution..
I was basically told - " we don't look at results like this "
Critical thinking seems to be completely absent ..

 

I want to bring this thread back onto the topic of FND, as my comments and responses have gone slightly off-topic and I don't want to make the thread about me.

It does relate me to, but also to everyone who receives the FND diagnosis and that's the worry that the FND diagnosis will follow me around forever now.

It has been mentioned by 3 neurologists, each of whom were referred to by the previous one so there was no ever any chance of the second and third ones not being biased to already think I had FND upon seeing me.

So I think it may be pointed to or held in mind to silently judge me for years to come - me and anyone else slapped with the FND label.

As noted here many times and inherent to the guidelines and practices around diagnosing FND by its proponents, it doesn't seem like FND can be falsified.

There doesn't seem to be any way to dismiss a prior diagnosis of FND as incorrect, regardless of what physical diseases are later diagnosed.

When you look at how FNDs main proponents (like Jon Stone) talk about diagnosing it, it seems like that process is totally predisposed to never saying that a newer diagnosis explains the symptoms and that the FND diagnosis was wrong.

They really discourage that. Instead neurologists are warned that other diseases can occur alongside FND, that FND is co-morbid with various diseases and that any new diagnosis doesn't invalidate the FND one.

Nowhere can I see any openess in these guidelines to ever consider the FND diagnosis rendered incorrect or superseded by new evidence. Instead there is a repeated encouragement to keep the FND diagnosis.

This obviously seems like a horrendous way to practice medicine. And a theory you can't invalidate seems unscientific. I know I'm saying nothing new here, but I still can't over that.

It also seems totally in contradiction with the DSM-5s diagnostic criteria that state that all other organic explanations for the symptoms should be excluded.

If a known organic disease is found later (or indeed at the same time!) shouldn't that throw the FND diagnosis into doubt instantly?

I read and re-read all the FND proponents suggested clinical practice and I feel like I'm going crazy because it seems like is in contradiction with itself and presents FND as an illness that cannot be falsified.

Later I will present and go over some examples of the above from a relatively up to date FND diagnosing guideline by Jon Stone that I came across here a few days ago.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7850207/

 

from the review @DigitalDrifter quoted

my bolding. Thats misleading, because it ignores the fact that once given an FND dx all testing & investigation will stop, & likely never occur again since Drs are discouraged from further testing for fear of indulging/reinforcing what they consider erroneous belief in organic pathology.

The only thing that seems to change that is glaringly obvious objective signs presenting themselves, like oh i dunno, dying for example.

So the opportunity for a 'new neurological disagnosis that better explained their presentation', is effectively removed. who knows how many would end up with alternative dx if testing/observation/investigation continued.

so their reassurance that 'dont worry only 4% are misdiagnosed' is disingenuous at best. Not to mention that it ignores the consequences on the 4% even if the figure were accurate/defensible.

oh... & 'fear' of misdiagnosis? i never saw anything but certainty!

 

Trial By Error: A Letter Regarding Inflated Prevalence Rates for Functional Neurological Disorder

I have posted previously about how papers on functional neurological disorder (FND) have routinely mis-cited a seminal 2010 study in asserting that the diagnosis is the second-most-common presentation at neurology clinics, with a rate of 16%. In fact, the 2010 study found that only 5.5% had FND, the new name for the antiquated Freudian construct of conversion disorder. Many others apparently had symptoms that the neurologists could not explain, but that doesn’t automatically translate to a diagnosis of FND, which requires positive rule-in signs from clinical examinations.

Nonetheless, this claim—that Stone et al found FND to be the second-most-common diagnosis at neurology clinics—has gained credibility through repetition in the medical literature. But repetition doesn’t make it true.

This morning, I sent a letter to the editor of the journal NeuroImage: Clinical, asking for a correction in a 2021 paper claiming that FND is the “2nd most common” presentation at neurology clinics. Several colleagues co-signed the letter.

https://virology.ws/2023/06/05/tria...e-rates-for-functional-neurological-disorder/

 

Fnd is so unscientific and the porposed treatments so unproven and useless that the whole construct seems useless.
The whole overlay thingy is another point i get angry about because it basicallyy says they can never be wrong or accept it was wrong.

I suggest that they have a many holes in their knowledge that they are ashamed of amidting.

Also stopping tests because of supposed beliefs is also wrong because if a cause is then found Then treatment can commence.

Neuro babble site is a con because it sucks you in thinking its scientific but when you dig deeper and you try to understand it there is basically nothing.

Thats my rant of the day

 

Right, it is unfalsifiable. Because you can have Parkinson's AND have a functional tremor that is different from a Parkinsonian tremor (per the FND experts). Or you can have epileptic seizures as well as functional/dissociative seizures, so even if they decide you have epilepsy after giving you an FND diagnosis, they still say you have FND as well because the seizures have different features. Even in a case study a few years ago describing three patients who died of a prion disease within months of having been diagnosed with FND, the authors decided the FND diagnosis was correct at the time and that the prion disease manifested as an FND. Ok, then.

 

Here is quote from a reply from daves blog which seems quite interesting.

As a leading psychiatrist, Dr. Allen Frances Professor, Chairman Emeritus of the Department of Psychiatry and Behavioral Sciences at Duke University School of Medicine mentions on Twitter, post from Feb. 24/2022:
“Awful problem with DSM-5 ‘Functional Neurological Disorder’ is not how it’s defined, but how used.
Vanishingly rare if strict DSM definition is closely followed.
But very common when used carelessly (especially in neurology) to blame all" unexplained symptoms on psych disorder

 

I know of one way that FND might be falsified.

I had a physical bowel problem which was diagnosed as IBS and also as being functional back in the 1990s and I therefore got no treatment. A few years later a doctor decided that I had a gynaecological problem and I got surgery where it was looked for. But instead of finding the suspected gynae problem they came across the cause of my bowel pain and fixed that.

If this had happened now instead of 25 years ago I suspect I would be diagnosed as having IBS with a functional overlay.

 

You couldnt have IBS with a functional overlay because IBS is considered functional in & of itself. No need for an overlay.

IT would have to be a dx of 'whatever-they-found-and-fixed', with a functional overlay'

 

True, I forgot about that.

 

Nothing wrong with two co-morbid functional disorders! They require separate specialized forms of CBT.

 

Exactly. Jon Stone is out there saying what he considers best practice now, and the DSM5 at least says to exclude other causes of symptoms - but thats guidance.

What's actually happening in clinical practice?

 

In practice setting i think we are seeing biases involved here beliefs or the general belief that tests are negative.

So what stone says about fnd he is showing his bias and beliefs and not any medical and or scientific facts. So what every he says we take with a grain of salt.