Mayo Clinic re FND

[210272]

This is interesting

'Diagnosis

There are no standard tests for functional neurologic disorders. Diagnosis usually involves assessment of existing symptoms and ruling out any neurological or other medical condition that could cause the symptoms.'

So where does that leave the Hoover's sign, the tremor entrainment thing and the other 'positive signs' needed to make this diagnosis in some parts of the world? Also what's all the stuff about 'internal inconsistencies' being the hallmark of FNDs (according to the FND content providers and the BMJ)? Anyone got a citation to the origin of that hypothesis? I've looked and although I can find some papers about it, I can't figure out who dreamt it up in the first place.

[Brokendeer]

Hi, I agree whole heartedly that FND is very much a `best guess' kind of diagnosis and this of course is the biggest bone of contension with us the label lumbered FND Sufferers!

My point of view is definitely coloured by getting the impression that Neurologists do not want to deal with any brain condition that does not have uniform symptoms, clear lines of progression, absolute testing protocols and especially no known prognosis path for their tick box sheets! They would always prefer to hand over those patients to Psychology if given the choice and get these awkward patients off their lists quickly to improve their success rates/ targets.

When I saw a Specialist Consultant Neurologist (to discuss Rehab options) I was classed as `Unexplained Neurological Symptoms' which actually is a more honest label in my opinion.

Bear in mind, the dubious diagnostic methods aside; Rehab offered in the UK is only based on older non-specific Therapies which have been cobbled together to form some kind of benefit to some FND Sufferers , as FND still as yet does not warrant the NHS investing in tailoring new Therapies for FND alone.

However Long Term Covid may well open those doors, as they have a very similar array of symptoms to FND and crucially they are getting the NHS funding as they are considered a widespread debilitating condition, unlike FND sufferers which we all know have existed in large numbers for years!

Anyway, I consider Professor Jon Stone as the foremost authority `Father of FND' in the UK having done the most research and pushed for the most NHS treatment options and runs the informative website neurosymptoms.org/en_GB/

Although he does not take questions directly.

Therefore you could ask through fndhope.org/ website, who have links with Dr Mark Edwards who is making a name for himself in the field and see if they can bring the questions of who sets the criteria for FND Diagnosis and should it be reviewed in 2021 especially in light of the Long Covid symptoms management programs which obviously are in the pipeline, and very much foremost in Specialist Neurologists minds!

Thanks again for the research you do.

Look for the calm in the Storm!

[210272 in reply to Brokendeer]

Very well put. I've been offering to debate with Jon for years but he's always too busy and ghosted me ages ago. Ho hum. The issue I have with any of these highly paid people is that they are still somewhat resistant to disruptive technology, IE us patients. We need flexible terminology that we chose for ourselves, just as we do re gender etc.