Video: Prof Jon Stone - Functional Neurological Disorder & MS - looking for a treatable cause of disability
13 Sept 2021 Professor Jon Stone - Functional Neurological Disorder (FND) and MS - looking for a treatable cause of disability
Defining FND - "tough one", "A disorder of voluntary sensors and motor function"
FND as a name is the patients choice. That it is a mix of Psychological and brain function, the example given is from childhood trauma as the cause.
Appealing to 2000 years of descriptions of FND.
Lots of talk of potential history noxious gases etc etc.
In the 1960s Neurology couldn't diagnose this conditions accurately and threw the concept away. This talk considers this a wrong turn and Psychiatry is just fine really and it was a lack of interest in understanding.
Its a crossover over brain and mind.
Money. Second most common reason people see Neurologists, after migraine. Accounts for 30% of seizures. Cost must therefore be huge.
These are often not transient and disabling in the long term and are being ignoring.
Still don't know what is causing it. BPS mentioned as a potential cause. They know that people with FND look different on brain scans than people pretending. More activity in agency circuits. Abnormal connections emotional and limpic system. Aberrant connections being made. Areas of under-activity in Thalamus. If you see improvements in this activity then the patient improves.
Trauma and stress more common in FND patients. 15% don't report trauma. A lot of the data is poor. But its OK because often the traumas are quite mild and we should be cautious about reading too much into that 15%. They do acknowledge that in young people continuously searching for such trauma often causes its own trauma, where trauma is present however they know but don't want to talk about it but rather the fact their arm doesn't work. Nothing explains why abuse 20 years earlier can result on that particular day a symptom appearing. Trauma is not the answer to everything on how the brain works.
Unnecessary drugs, clinical investigation often misses things and ultimately ends up subjective.
We don't have any reliable biomarkers. If you use things like Lactate you end up with a diagnosis of exclusion, FND should not be treated as an exclusion diagnosis. Should be able to positively identify a functional tremor and extend that to things like paralysis.
Team work. Apparently no patients have seizures just 7 days after CBT with equally long term benefits. However the randomised control trial showed less but "significant" benefits.
Psychological therapies. CBT model based on avoidance but doesn't help seizures. We don't know CBT works. Lots of evidence suggesting Physio helpful and multidisciplinary therapy looks very promising. With FND there is undo attention paid to the dysfunctional limb so they build a physio model towards other areas. Psychological informed physio is a model. The results look very very promising. CBT tends to oversell itself, its not the only mechanism.
No one medication to treat FND. LSD helped a patient who lost use of 3 limbs some time back.
Psychedelics didn't seem to help in the Psychiatrists view. Aviactrin (Sp?) deals with repetitive circuit dysfunctions and it can disrupt that process. SSRIs might be helpful, cyclic anti depressents also. Keeping people away from harm like opiates is important, have patients manage pain in a more appropriate manner.
Covid. Persistent Long Covid sufferers. FND and Covid 19 vaccination go together.
Expecting many Long Haulers to get FND diagnosis. Lots of functional disorders. Expect Strokes, Alzheimers and vascular damage from all the inflammation also but the rest is Functional. Those with community based symptoms where their Covid wasn't bad they all appear to be FND including things like Postural dizziness. Large cohort of dysfunctional breathing people and functional disorders. Worry is people aren't looking at these with positive criteria to make the diagnosis and will be lost in the mix.
Viral illnesses are one of the commonest causes for functional disorders so of course Covid19 will be a big cause, there is with every other inflectional disease.
FND patients are not happy. MS patients get significantly better care.
Disease apartheid - Get something on a scan you get one approach and otherwise you are doubt of any condition at all. Distortion of priorities in elevating some patients and dismissing others. What would help was evidence of treatment and evidence of biology.
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I haven't split out the notes based on the neurologist verses the Psychiatrist but they are clearly coming at it totally differently. The Psychiatrist is seeing it everywhere and beleives Psychiatry and physiotherapy can treat it. Whereas the Neurologist is seeing a type of Brain damage that is resulting in functional problems and doesn't have a treatment or even a good diagnostic yet.
This is a horrifying thing to watch really, they have no evidence for this nor have they found any treatments that work.
