Functional Neurological Disorders - discussion thread

Schizophrenia was claimed by the CBT brigade, they even claimed CBT was a cure. This was later debunked.

 

I don't think it implies that all of them have. I suppose someone could read it that way. To me, it implies that as a general rule these disciplines and specialists have taken that position. I think that's defensible, given the DSM and all that. I don't really understand your second point. They have framed it in a simplistic and kind of reductive, meaningless way--thoughts/emotions cause symptoms. That framing concerns me.

I'm not sure that challenges in avoiding misunderstandings means that these difficult topics should be avoided. But I make no claims to really know what the best way to handle all these things is.

 

Sort of. They're still denying peripheral contributions as being important. But really, the hardware/software analogy is not at all comparable to how real bodies actually work and it is insulting to our intelligence to perpetuate the analogy.

 

I would agree with this. The analogy has broken down in their own terms, but it breaks down on other levels also.

 

I can't find anything that suggests the view that CBT is curative for schizophrenia has ever been mainstream.

 

The average person would easily confuse claims that a treatment "is effective based on multiple randomised trials", with claims that a treatment can lead to remission. (we all mean remission, when we say cure...)

 

Well it does certainly seem that psychotherapy researchers often have a particular preferred self-serving mode of mangling language.

 

The FND diagnosis is a medical-sounding term designed to hoodwink patients into accepting it more easily than the previous diagnoses for the same diagnostic entity (hysteria, conversion disorder). It's really just old wine in new bottles. Because this field is so highly controversial, there is a euphemism treadmill whereby every few years or decades they come up with a new term with which to fob off these patients from neurology clinics, once the old term has become too offensive.

None of this is to say that FND isn't real or that symptoms aren't real or that people's lives aren't ruined. I am simply challenging these bizarre and totally unsubstantiated aetiological claims by BPS people like Stone about hardware vs software, conversion of emotional distress into physical symptoms etc. The fact of the matter is that neurology doesn't know what causes these symptoms. All that can be said is that they don't fit into any known disease.

 

But what is the alternative then for patients diagnosed with FND? Is there a more specific, alternative diagnosis that would be a better description of their medical condition?

I suspect that not having a diagnosis can be quite horrible. So if there's nothing to fill in the place of FND, I can understand why patients would prefer that label and why they feel annoyed when ME/CFS patients on Twitter claim there's no such thing as FND.

The diagnosis seems like an improvement over the Freudian labels that came before that (in that it's more neutral aetiologically) and at least there's some neurological research going on into FND.

So I think if I had FND I would argue to clear the label FND from theories and speculation that are not established yet. I might also argue to make the diagnosis more specific for example in making a distinction between the epileptic-like seizures and unexplained muscle weakness.

 

These are good points but the situation is not so simple.

When Stone wrote his first FND papers there were lots of caveats especially with movement disorders. As he has become more secure in his beliefs these have disappeared yet movement disorders are very complicated. MS may be easily diagnosed by MRI but that is not the situation with many neurological disorders.

Certain cancers can cause autoimmune movement disorders for instance then there is a whole list of genetic diseases. In the case of Myotonic Dystrophy they are finding that family members have the gene but do not all have the whole set of symptoms so they were dismissed by neurology departments. Some of the overall papers about the disease have an air of despair when they say that neurologists are very bad at diagnosing them.

As I say, MS can be diagnosed with some certainty nowadays but as little as 20 years ago you had to be very bad before you were not dismissed. Many of my friends had "weird " chronic disease with little help from medicine for years before they were finally diagnosed.

My complaints about FND are that

It is being diagnosed at the expense of a proper investigation of symptoms so major diseases are being missed

Calling something psychogenic stigmatises - dropping down on a busy road from a psychogenic seizure is just as bad as any other type of epilepsy

It is stopping research into the true causes of neurological problems just at the time that technology could be helping people in the way that MRIs now diagnose MS very early AND there are drugs that can fend of the disease progression if given soon enough.

It is a blind end for the patient.

 

Yes but are they aware of the official classification?
"In ICD-10, functional neurologic disorders are classified exclusively in the psychiatry section as dissociative (conversion) motor/seizure/sensory disorders (F44. 4)."

(as far as I can see in ICD11 they are 'Dissociative neurological symptom disorder')
see also:
Dissociation and functional neurologic disorders.
https://www.ncbi.nlm.nih.gov/pubmed/27719880

 

There's a doctor in Belgium who claims that CFS is just misdiagnosis, that there's no such thing as CFS etc. And while I appreciate his efforts to try to find misdiagnosis and show that some CFS patients really have lupus, a sleep disorder or something else, I find his statements also frustrating and not really supported by facts. Most researchers and experts can't find a misdiagnosis of a known disease in most CFS patients and this has been the case in multiple countries for more than 3 decades.

I know less about FND, but perhaps the situation is similar. Perhaps this label is sometimes given too soon without a thorough examination as is sometimes the case with CFS.
But I suspect this isn't the case for the majority of patients with FND and that many remain ill for long, have multiple investigations without doctors finding an alternative diagnosis.

To follow my thought experiment, if I were a patient with FND I think I would advocate to change the classification rather than the diagnosis.

 

see also
What relationship do stressful life events, neglect and abuse have with functional neurological disorder (conversion disorder)?
Posted by
Mark Edwards

https://www.nationalelfservice.net/...ogical-disorder-conversion-disorder/#comments
(bolding is not mine)

 

I came across S4ME over a year ago when I was still undiagnosed, and have lurked here ever since, because of the forums rigorous approach to the discussion on ME and related issues. I feel this is a good moment to give a patient's insight on the FND discussion.

A little background: in march 2019 I was diagnosed with FND, more specifically, FMD: Functional Movement Disorder at the Amsterdam University Medical Center. Late 2018 I started getting a tremor in my left hand, and a small postural tremor in my left arm. Shortly hereafter I develop a tremor in my right leg after which a trajectory of tests was initiated, resulting in a diagnosis 4 months later.

In the interim my untreated anxiety disorder went through the roof, and more and more symptoms developed: I became unstable, got cramps, muscle weakness, fasciculations, internal tremors, sweaty hands, and a bunch I have forgotten by now. My mobility suffered, as did my relationship (which was good prior to the symptoms). I had moved to Amsterdam to live with my GF earlier that year. Both her and my mother were skeptical of the idea that there could actually be something awry, which added to the stress. I had to leave my newly acquired job and started to have real problems with walking, standing and stair climbing. Living on the 4th floor and not having yet established a solid social network in Amsterdam, led to becoming housebound for most days. My GF was not helping much by saying 'this is not the man I fell in love with' and 'I really don't like coming home anymore'.

After receiving my diagnosis she changed her attitude, as did my mother, but my relationship was heading south even further regardless. To wrap up my story: I moved back to my hometown, where I had a large support network in the form of family and friends. Shortly after that I ended my relationship. I had to eliminate the stress and uncertainty of whether I could manage a life and relationship in Amsterdam. Unfortunately the answer was no, in the spring I had further deteriorated to the point where I could barely get from the bed to the toilet 4 yards away. I had to use a wheelchair outdoors, and at moments, even indoors. Now, 6 months on, I can walk a couple of miles a day, cycling goes well (a lifesaver in the Netherlands) and I can dance again for a few hours a week. Prolonged activity will trigger symptoms, as can a flu or inflammation. Each day I will have cramps, pains, and instability, all minor fortunately.

The trigger for my FND was likely the many changes and new challenges in 2018: selling my house, quitting my job, moving to Amsterdam, first time moving in with someone, doing a 'pressure cooker' retraining program as Business Analyst. I was still teaching dance and practicing choreography for events. It was basically my best year ever, everything changed for the better, until in November the system started glitching.

I feel confident in the diagnosis for a few reasons:
- In the tremor registration test determined that my tremors are variable in frequency, amplitude and place. They can be altered by distraction and rhythmic exercises. This is a positive sign, as other organically caused tremors have a fixed tremor frequency and are much less variable.
- The suggested treatments and measures have made a partial recovery possible: removing stressors, neurofysiotherapy to learn to calm the body and retrain movement, medication for the anxiety disorder, mindfulness training, CBT tot learn how to pace myself, accepting things as they are for now.

I tick a hell of a lot of boxes for a predisposition for FND:
- Difficult childhood
- Anxiety that started at a young age (5)
- Perfectionistic in nature
- Always active, always 'on'
- Used to putting the needs of others before my own.
- coping mechanism of pushing through things.
- control oriented

This has led, in my and my neurophysio's view, to a person that is high-strung, anxious, used to pushing the limits, and ignoring or missing bodily cues that call for slowing down. I have been overstretching my CNS and body for close to 40 years.

Ok, enough about me; on to the good and the bad of the label FND and how the FND community relates to the medical field:

First the bad, some will be very familiar to ME-patients:
- Many older neurologists do not recognise FND's or send a patient to a therapist, believing that is the only path. FND patients see on average 19 specialists before getting a diagnosis, I believe the average Time To Diagnosis is 2 years.
- As with ME, it is very important to prevent a boom-bust cycle, prior to diagnose I was bouncing between pacing and pushing myself. Many get worse pre-diagnosis, because the keep pushing through.
- The diverse nomenclature is a chaotic, often archaic mess. There are 60 - 80 labels that refer to FND, some with terms like 'psychogenic' 'hysteric'. 90% of these I reckon are redundant and many stigmatise and confuse.
- The patient community is very fragmented because of this, the largest global FND Facebook pages have around 7K members. In the Netherlands alone there are approximately 85.000 FND patients.
- Although many FND studies thankfully work towards increasing the tangible evidence of structural brain differences, some recent theoretical BPS research still uses terms like 'secondary gains', (having symptoms prevents the patients from getting into a stressful situation). These views are generally scoffed at by the community and rightly so.
- The number of studies on FND is tiny! This is in stark contrast to the large number of patients.
- Only in the last 10 years has some progress been made in terms of diagnosis, treatment and appraisal of the disorder. Many long time patients have gone without diagnosis, treatment, social support for a long time. To add insult to injury many have been labelled mentally ill or malingerers.
- Physios that specialise in FND are far and few between.
- FND belongs, tot my mind, not in the DMS

Now some good news

- The label FND is better than the previous labels, at the very least on surface level with regards to stigmatisation.
- FND and FND-research gets more traction among the younger generation of neurologists.
- As imaging techniques improve, more and more evidence emerges for subtle macro level differences in grey matter, micro level differences in connectivity and differences in functioning of the brain.
- elevated levels of glutamate have been detected in the Limbic System of FND patients.
- Misdiagnoses are few (3-4%), many patients have had MRIs and EEG to rule out organic diseases.
- Jon Stone is generally seen as a force for good in the FND community, I do think that the neurosymptoms site needs updating with the newest research. Much of Dr. Stone's FND work, he has to do in his spare time.
- There are some small, recent studies that suggest that Neuromodulation, mostly in the form of Repeated Trans-cranial Magnetic Stimulation, can have swift positive effects that appear to be reasonably durable. This is a therapy I am pursuing, I will have to go abroad most likely.
- I haven't felt for one moment I was put away as a mental patient, I have come across no stigmatisation on a personal level. The experience very much depends on the Hospital, practitioners, your environment, how it is communicated, and your own perception. I've read just about everything on FND, there is not that much out there, and the tone in the recent studies generally is distinctly different from the research of 15 years ago, for the better.

I am confident (as a well-read lay person) in saying that FND patients have brains that are structurally different, subtly at the macro, at the micro and possibly chemical level.
But are these differences pre-existing? are they the disorder or the brains adaptation to the disorder? I feel we will know a great deal more in 5 years.

Lastly (this post is getting way too long) what I do know, at least from my own experience, is that stress greatly exacerbates my symptoms. The psychiatric treatment I receive is to create the best possible environment for recovery by tackling my anxiety disorder and learning how deal with my new predicament. That is the large psychological component, but it is that, a component.

I'm hungry now, the post ended up not as coherent as I would've liked, but I will be around to add some recent studies.

Now food!

Best, Gaspard

 

Thanks for sharing your viewpoint @Gaspard

 

There is hardly an illness that isn't made worse by stress but that doesn not mean it is caused by stress. Stress can kill a person with heart disease but the key factor is the existing heart disease, not the stress.

Similarly, the illness onset can be stressful for a variety of reasons but that doesn't mean stress is the cause. Illnesses that are poorly understood will be more stressful to have because there will be more misunderstanding and inappropriate reactions to it.

I'm also not impressed by lists of personality traits that some patient group allegedly exhibits. This was done with a lot of diseases in the past, like cancer and asthma and it seems to be an indicator that the illness is frustrating for patients and doctors, not that there is a tight relationship between personality and illness.

 

@Gaspard, your perspective is very helpful. thanks for sharing it.

 

To add some more information on my point of view:

An article on psychosomatics from 1945 says "the emotions are regarded as the primary cause - or as precipitating or aggravating factor in many cases of bronchial asthma, hay fever, hypertension, arthritis, heart disease, rheumatic disease, diabetes mellitus, the common cold and various skin conditions such as hives, warts, and allergic reactions."

If you've read BPS papers on ME/CFS, the arguments presented in that article are often the same ones, just the illness to which they are applied are different.

https://books.google.com.au/books?id=JVMEAAAAMBAJ&pg=PA51&dq="psychosomatic"&hl=en&sa=X&ved=0ahUKEwiuqfqIspveAhWKfCsKHRIgBT8Q6AEISTAH#v=onepage&q="psychosomatic"&f=false

 

Of course prolonged stress is bad for any disease, and there is a substantial group of FND patients that does not report significant stress prior to the onset of symptoms, it's therefor definitely not the primary driver. I do agree that any MUS can be inherently more stressful, for all kinds of reasons, at one point I literally thought I was dying as new symptoms kept piling on.

I do think stress plays a larger role in FND than many other disorders as the Limbic System is disregulated, arguably leading to a more severe response to stress, or cues are more readily perceived as stressful. The Limbic system is also involved with many other processes, which it will interfere with when disregulated.

It could be that there is a clear organic cause, that hopefully then can be targeted effectively. I think that for better or worse, FND is the best 'working title' for those diagnosed as such, as further tests yield no further evidence for other known diseases. Many FND sufferers that get a swift diagnosis and have good access to interdisciplinary care improve, and some may recover completely. In the meantime research keeps ticking over, and will give new insights.