Progress on Tuller et al's questionin... - Functional Neurol...
Progress on Tuller et al's questioning of the actual prevalence of FND. As usual, I'd welcome your thoughts ...
That is a very welcome move. There is much more than the inaccurate reporting of figures to take issue with from that research. Patients were initially identified by the attending neurologist at the first appointment and with no testing having been carried out. The follow up study merely asked the GP whether there was any change in diagnosis. Imagine the scenario - a patient goes to their GP, probably repeatedly and on finding nothing physically wrong, the GP makes a referral to a neurologist, stating all tests are normal (perhaps a possible mention of psychological issues at play). With this reference before the neurologist they make a further visceral judgement. Were these patients offered any tests after that first appointment? Even if they were, what was being carried out in 2002, when the research was carried out? And then the referring GP feels there isn't anything more to be done with their mentality ill patient. I think the study would be better analysed from the view of the disengagement of patients. Did the patients agree with the final diagnosis which is used to bolster the lack of misdiagnosis finding from the follow up study? Or did patients simply stop asking when faced with a medical decision of a psychological etiology and immovable medical professionals?
We definitely need more challenges to the lack lustre research around FND.
Thanks, Crypto127 - these are great observations and questions. If you have the capacity to comment on David's blog (you can remain anonymous if that's your preference) that would be grand. Worth noting that FND is not a psychological aetiology - it's neuropsychiatric and in DSM. Although I will never understand why, given that it is meant to challenge the false mind/body dualism stuff. Meanwhile I'd be interested to know what would happen if complaints about this diagnosis were considered from the perspective of patients, rather than the neurologists concerned, as happened in the UK: dx.doi.org/10.1136/bmjopen-...
And what that means where I live (not in UK) is the neuro docs wont see me because it is psychiatric and the psychiatrists won't see me because it is neurological. You can not get an assessment by a neuropsychiatrist here unless you are being seen by a psychiatrist - you get 1 appointment, sent for tests, referred back to psychiatrist with treatment plan they are to monitor. The few neuropsychiatrists there are are so busy they do not see outpatients. The major university near here, with a neuropsych department, says they get 500 new referrals every year.
Well said! It's the same in the UK and with the NHS and even private GPs and services.
This thread is fascinating to read. There are few core disastrous elements mentioned that I see time and again:
When mistakes are made, often at first or earlier presentation, these are then baked in and the diagnosis will not be changed, despite others viewing it differently or more or the original evidence coming to light - or merely being viewed at all. Sometimes quite soon after presentation. Sometimes it's an off the cuff or cursory or informal diagnosis made. That then sticks. So if the wrong (or no) speciality sees the patient (or it's a rushed or unskilled person making that decision), and therefore they are unsure or wrong, that is the set in stone 'answer' and there is almost no way to correct that unless another clinical person is happy to challenge that.
If the course of the disease changes, or post event/s the course changes, or the recovery is reported on at different points with further information, or information that is accurately recorded and heard, each new data point goes through another brand new assessment process, bizarrely often in more than one speciality - oh it's mental health, no it's psychiatric, no it's social, no it's neurological, no it's trauma, no it's organic. It might be all, it might be none, it might be some. Then a simple blood test may reveal which one of these it is. Or it may not, but another 3 or 6 months before or after may do. In the meantime?
Some diagnoses will inevitably be neither nor, either or both, who knows in clinical terms, so therefore with the structure of current clinical delivery will always be shuffled or signposted between services/specialities/teams despite them wanting to investigate or treat or check again after a few days, months or years and watching waiting to see the progress of symptoms. The better ones seem to acknowledge this and say, whatever 'it' is or was then or now, or whatever event, change or input has happened, we will care for how you are now and from now on.
Disease presentations seem to 'change', but they are not, but it is understanding of what was always there is what has changed. Perceptions. Accepting that 'we don't know' but whatever this is is still real, not made up, not pretended. The lack of curiosity and ability to ignore data that doesn't conform to a very clearly inaccurate or totally wrong and mistaken guess and is an obvious error or unknown seems irrelevant or unaddressed in so many areas of medicine.
Sometimes I have been too unwell to be accurate or articulate in my communications, so others have interpreted or guessed. Sometimes those guesses have been wildly inaccurate and I have not been believed - then that lack of belief in what is being communicated becomes the diagnosis - 'patient feels distressed'. That has left me ill, in pain, fatigued and intensely distressed being flipped about or left with no treatment.
So many dismissed with 'non-organic' or 'social' or 'medically-unexplained' or 'psychiatric' and that assumed to be 'psychological' and therefore factitious. Then everyone pointing fingers while the patient does what? Then it's down to who believes who or what and if they get the chance to present their 'case' to someone who might be a tiny bit curious, in any speciality. Why don't the psychiatrists speak to the neurologists, let alone the neuropsychiatrists (and neuropsychologists)? Or the gastroenterologists and rheumatologists?
I'd like to know how many diagnoses change, are overturned, are added to, or reevaluated, when and why.
My understanding is FND is not simply a renaming of conversion disorder, as this article suggests.
For example, dystonia is not classed as a conversion disorder under the old way of looking at things, and it is classed as part of FND. Conversion disorder is considered a strictly psychological issue from what I can gather, which is exactly why a new category was made in the DSM - a recognition that issues previously labeled as conversion disorder actually do have underlying non psychiatric components.
FND is meant to indicate an issue with how the brain/body function - recognizing that not everything is seen via catscan, xray, or plain mri - but there are genuine causes for issues that can be seen say on a functional mri. These issues may occur, for example, due to chemical level communication going wrong, or issues with neurons (such as axonal shearing) that are not seen by the usual testing methods of today.
Function may be thought of as physiological activity. Physiology may be effected by how we think and also effect how we think.
FND is an overarching category that includes FMD and FCD which are Functional Movement Disorder and Functional Cognitive Disorder. As well as dystonia, certain aspects of brain injury may also be considered part of the FND family (axonal shearing is an example).
I have noticed that a lot of different professionals interpret the new category in different ways. I have taken an introduction to the topic from one of the doctors very much at the forefront of the move to rename. It's a real struggle to find language to describe the intent because the current vocabulary we have to use is so deeply associated with other conditions- people therefore tend to jump to conclusions based on existing mindset, rather than seeing behind it to the real intent. I struggle as well, and have done my best here to hopefully give some insight.
I do not expect to get any real help til medicine catches up and at the rate it's going I'll be long dead before that happens.
What I have to do is use the knowledge and practical experience I have and do my own therapy program, doing my best to steer clear of those who do things such as confuse conversion as the same as FND - it is not.
There is also a trend to promote CBT these days and within it to do guided 'meditations' that are not meditations imo, but are guided focus on parts of your body. I consider this focus training, not meditation. And, from my experience is of limited value., and it may also cause more harm than good. Helpful meditation, in my view, teaches exactly the opposite - not to focus - instead, to step back and be a neutral observer, in a mindful way, and to slip past that...which is not something you can understand unless you have the experience during meditation. There is a difference between mindfulness and meditation, and mindfulness needs to include compassion. (My rule of thumb is if someone says they teach meditation and they can't shut up for more than 10 minutes during it, or talk nonstop, they are not teaching meditation, they are doing something else. )
I found myself in the 'brain injury' category after viral meningoencephalitis. Then I was tested in several hospital stays and finally saw clinicians who diagnosed or rather recognised (and read the notes of other clinicians) something else I'd had from birth but sits in a few symptomatic categories (hypermobility) so hadn't been pieced together. I dropped off the neurology list completely. The psychologists and physios and gastroenterologists were honest enough to admit how frustrated they are that some specialities refer out or around and it then takes years to sit under the right teams - if you get that to that point.
I was gathering diagnoses for another decade as few seemed to realise relatively flexible diagnostic criteria and it could be this, it could be that. That's as accurate as it got. Then some data was excluded as it was inconvenient. Then with another disgnosis - if you flip pain above fatigue in your presentation, or fatigue above pain, you get to collect more or different labels. Then the next clinician decides no, pain is the primary identifier, not the fatigue. The other symptoms don't get a look in as what? It's not convenient? Then I would cycle back around to someone listening and accurately identifying what I was describing, another symptom, or even if I still had it.
One doctor said functional merely describes tht you are having trouble with the functioning of your body. Yes, I know what functional means! But that's diabetes too under those terms. And asthma. And incontinence. But in this context, there's a whole heap of other things it's assumed or meant or misunderstood to mean. And others did tell me that my brain was 'converting' signals to tell me something was happening that wasn't. I didn't get hysterical, but I did chat to them about the history of women diagnosed with 'hysteria'.
Very low level almost introductory CBT seemed to be rolled out as a supposedly cost-saving cure-all and that's done a lot of harm. It has its place but had been assumed to be something it's not.
