Functional Neurological Disorders - discussion thread

In your lifetime, plenty of MS patients have been misdiagnosed with a label which was historically associated with hysterical illness (conversion disorder, FND).

Functional neurological disorder and multiple sclerosis: a systematic review of misdiagnosis and clinical overlap
https://link.springer.com/article/10.1007/s00415-021-10436-6

 

Yes, it seems that the confusion hasn't been due to the medical understanding of MS but due to misdiagnosis for other reasons?

See ME/CFS Skeptic's blog:
https://mecfsskeptic.com/psychosomatic-history-of-multiple-sclerosis/

(Forum thread on the blog series here .)

Only read the abstract-- the authors state that there is a similar problem vice versa: FND misdiagnosed as MS?

Edited to add: Have no idea though about what both articles say about the relevance of neuroimaging with regard to misdiagnoses.

Edit 2: fixed link.

 

Exactly, which is something quite different from regarding MS as a hysterical illness.

The problem I see is firing off tweets that reflect an ill thought out analysis that muddles up (a) the obvious fact that some people with mild MS and few if any hard signs get misdiagnosed as having no organic pathology and (b) the meme that is often pushed that until recently diseases like MS and myasthenia were thought to be hysterical so that means that any suggestion that ME or maybe in this case Long Covid (although I think the two are being thought of together here) is hysterical is going to prove wrong. The reasons for it proving wrong lie elsewhere. At least since I was a medical student the presence of organic pathology in MS and myasthenia has never been in doubt.

As much as anything it is the inconsistency and lack of thinking through of the messages in the tweets that is the problem.

 

Jo, this is interesting. I guess when I've seen that general meme I've understood it as meaning what I assumed VanE meant--that people with what would actually be MS (or myasthenia) were being misdiagnosed as having hysteria, not specifically that those who recognized MS called it hysteria. That's distinct from the status of, say, asthma, which at mid-century was considered one of the seven core psychosomatic disorders, along with hypertension, ulcers, etc.

But perhaps that distinction has been assumed rather than often made clear--I'd have to read back and see how people have phrased it, other than VanE. Or maybe people really have been saying that MS itself was once called a psychosomatic or hysterical illness? I have generally understood the relationship of these issues to ME/long covid to involve the certainty with which clinicians have attributed symptoms they don't understand to psychosocial factors, whether or not an available medical diagnosis like MS exists. But your concerns have sensitized me to how there has been ambiguous language on this stuff.

 

What are those reasons that this should be contrasted to?

 

I don't think using specific words really matters. Hardly any physician out there pushing ME patients to exercise has ever heard of "unhelpful illness beliefs" of any of the ridiculous BPS narratives about fear of exercise of whatever. All they know is they have to encourage us to reduce stress and exercise, they are applying the BPS tropes of unhelpful illness beliefs without having any awareness of them. Just the same very few will even think of supervised exercise, will only advise to go jogging and not think further, they are applying a model without being aware of what it's based on.

It's still 100% based on this model, even though they never heard the "hysterical paralysis" version of it. Doesn't matter if few people called MS hysterical paralysis, it's still the concept many were pushing. Psychosomatic medicine is pretty much defined as manipulating words, hardly any surprise there. No one involved in this ever says what they mean or means what they say anyway, they know we think it's a bunch of crap, they just can't process why, they think howling monkeys instead of horses.

 

I think this happens but its not universal. Doctors go back to basics when they don't know what to do. Exercise is part of their general public health message, so they prescribe it when in doubt. Its similar with rehab advice.

What percentage are cluelessly trying to be helpful, and what percentage are following a BPS gameplan with or without awareness they are doing so, remains an open question.

Either way its still typically harmful to us.

 

Just what PME say about their experiences, and taking it at face value.

 

I had a very disturbing incident while on holiday. Brief story I woke up one morning and had full paralysis from the waist down. Immediately went to er after a week in hospital the diagnosis was never explained to me but the diagnosed me with fnd. A week or too later a read the hospital report and one test completely stood out csf protein very highly elevated. So I suspect something happened and it wasn't fnd but probably something else. Two years later I am still having trouble getting diagnosed.
To me fnd is useless and hampering care

 

Merged thread

Article in Verywell: How an Organic Disease Differs From a Functional Disorder

https://www.verywellhealth.com/organic-disease-1944921

 

The itching caused by increased bilirubin levels that I experienced a number of years ago was very much associated with those bilirubin levels, when the levels reduced the itching disappeared.

The author. "Barbara Bolen, PhD, is a licensed clinical psychologist and health coach. She has written multiple books focused on living with irritable bowel syndrome."

 

The pain in my lower gut and left side was diagnosed as IBS and I was told it was functional. After I had surgery (several years after the functional diagnosis) it was reported "it was seen that the sigmoid colon and omentum was adherent to the pelvic rim and the left abdominal wall." When that was dealt with my "functional" IBS almost completely disappeared and became a non-event apart from a very rare spasm of pain.

I should point out that the surgeons weren't looking for adhesions, they were looking for endometriosis. I would never have been operated on if they'd been looking for adhesions, because most doctors I discussed them with 30+ years ago didn't believe they caused pain.

 

Quantum Medicine my friend. Functional means one thing to patients and another to medical professionals. It allows them to occupy two different positions at the same time.

 

https://www.youtube.com/watch?v=I6ipU7RrQQc

https://jnnp.bmj.com/content/83/3/248 - One advantage of ‘functional’ may thus be as a simplifying euphemism, allowing neurologists to use the same term to mean one thing to colleagues and another to patients. It may be precisely this ambiguity which has allowed the construct to survive despite the uncertainty and conflicts underpinning its meaning at any point in time.

 

I can't decide of this is confused, naive or plain lying to make the diagnosis palatable by saying something the patient will believe means one thing while the doctor means another.

FND is said to be an "opt in", accurate diagnosis which has a specific cause; that is a disordered nervous system caused by trauma. And it can be reversed by CBT to change thinking and physio (exercise) to strengthen better pathways in the brain.

Only in the sense that the trauma has passed but the damage from that emotional state remains.

All FND is considered one disease where the symptoms differ because of, well, the language obscures rather than illuminates but I think it is meant to be things the brain is familiar with like seizures if you have had epilepsy.

That may have been true in the past but Stone and friends are very keen on "functional overlays" so a test and cause may be found for interstitial cystitis but I am sure they will insist that a part of the disease is a weakness for FND. They are unwilling to accept anyone has ever been misdiagnosed.

Then there will be no research money to find an organic cause of any disease that is considered FND because they know FND is the accurate cause.

Overall, these statements do not leave you with a correct idea of FND as described in the FND literature or the experience of patients who are told they gave FND then left to struggle on with no further help or hope.

 

She lists ADHD as a psychiatric disease. Well, in such a simplistic contortion this article is, it had to be slotted in somewhere.

 

Sky News is reporting on efforts to have FND (Functional Neurological Disorder) recognised better. They've interviewed a Professor Mark Edwards. A charity called FND Hope UK is also quoted. Meeting with MPs in Westminster 8th Feb!

Article here, not found broadcast yet, not sure if they'll bother to put it up.

Personally I'd call the charity FND Despair, or possibly FND Idiocy, but there you go!