Where is the proof that professor John Stone has proven how people get FND.

[GrEeNbEeNs]

Someone put a post up saying that professor John Stone has proven that FND is caused by trauma in your life, can anybody tell me what tests he done to prove it because we all get told that nothing shows up in an MRI scan so how the hell can he prove it if theres nothing to see.I'M BAFFLED

[Sparklingsunshine]

So if that is the case why isnt it more widespread? There is an epidemic of MH issues in present day life and yet not everyone who has experienced trauma goes on to develop FND. And how do they define trauma?

What is traumatic for one person isnt for another, we all have diffferent levels of resilience and coping mechanisms. Are they talking physical or mental trauma or both? If they believe its trauma based why are FND patients not referred for psychotherapy or other trauma based therapies.

I'm not saying its wrong to say that in some cases FND might have been triggered by trauma but its not universal by any means.

[210272 in reply to Sparklingsunshine]

Great questions, as ever (and please see my reply to Greenbeans above). Trauma is defined differently by different people (no surprises there, then) but a reasonable descriptor could be 'threat to body, threat to self'. It is rare that I go to in person rare conditions meetings and don't meet someone (usually female but not always) who has been told that if they don't accept a 'conversion disorder' diagnosis, their primary care will be withdrawn. This counts as a 'threat to body, threat to self' but you're right, not everyone finds that traumatic when it comes to the threat of having primary care withdrawn. People in urban areas just move to other medical practices and continue with their diagnostic odysseys but those in rural areas may find that more difficult to achieve. And, guess what? Yep - FND is thought to be more prevalent in rural areas. Hmmm. Given that it was coded partly so that drs could be paid to diagnose it I think 'right, let's follow the money in these rural areas' but, of course, this is impossible to do because of patient confidentiality.

As for the incidence of FND - there is such variability in the data that it is almost impossible to tell. Some papers put it at 4-12 per 100K of the population but in others it's much higher and with the 'territorial expansion' underway I don't think we've reached 'peak functional' or 'peak hysteria' yet. *Sigh* I am not convinced by their misdiagnosis stats either since recording a misdiagnosis of FND is very difficult, as is recording a badly delivered diagnosis.

[Van604 in reply to Sparklingsunshine]

I watched an FND Society webinar at the beginning of COVID and all the doctors were really baffled because their FND patients didn't get any worse from all the stress - in fact some got better during that time. I think that was the turning point for some of them, where it made them think, well maybe this isn't caused by stress. My condition improved somewhat, I think because I stopped pushing myself so hard and got a lot more sleep.

[Van604 in reply to Van604]

Also, I had been referred for psychotherapy before COVID and did it for 2 years, against my better judgement, because the neuropsych insisted it would cure me. I actually got worse during that time, plus the psychologist said my problem wasn't psychological in his opinion!

[tabey]

what really gets on my goat is being told oh you have Fnd there must of been some trauma in your life like they know in a 10 min appointment

[Sparklingsunshine in reply to tabey]

And most people have undergone some form of trauma, bullying, abuse, bereavement, physical or mental health worries, financial problems. So we all have FND? I dont buy it, sorry. Trauma may be a contributing factor.

I'm reminded of soliders in war zones who get PTSD, or those in WW1 who got shell shock. But what about those who didnt have any significant trauma or those who did but never got FND. My dad was a Korean war veteran who saw terrible things. Never got FND though. Its a glib cliche and if they truly believed it then there are trauma based therapies they could offer. But they dont.

[kev60]

hi , my FND was apparently caused by an adverse reaction to a drug causing stroke like symptoms ( had to learn how to walk again) still suffering with the effects after 7 years. I was told trauma/ injury can be a cause but not in my case , I took Gabapentin for five days and on day five I forgot how to walk and was blue lighted to hospital. It took a further 19 months for them to tell me what was wrong, now I just live with it . I think as we are all different it would be a while and a lot more investigation to find reasons why.

[210272]

As far as I can tell, Jon Stone hasn't set to prove that trauma causes FND. I think he did want doctors to build trust with patients so that they were less likely to be defensive about a previous traumatic event but also said that drs could diagnose FND in the absence of a 'life event'. However I think that the FND researchers want to establish a sub category for people whose onset was partly attributable to trauma so that they get appropriate treatment (trauma informed) in a timely fashion.

Whether or not existing FND patients who have experienced trauma as a result of being met with 'scorn' in medical settings will be included in this subset remains to be seen and I still want to know what healing is offered to medical professionals who treat people with FND with scorn because it can't be doing their psyches any good to do that, can it? The old adage 'clinician, heal thyself' doesn't seem to be working so clearly they need an intervention of some kind for their sakes and the sakes of their patients.

[Sparklingsunshine in reply to 210272]

Well doctors have some of the highest rates of alcoholism, drug abuse and suicide so not sure they are in any position to look down on anyone else's trauma. And bearing in mind some of the things they experience how come FND isnt more widespread in the medical profession?

[210272 in reply to Sparklingsunshine]

Yes, if it is trauma related then I would expect to see more doctors with it. There are some neurologists who have it (I think Stone did or maybe still has) and I know there was a doctor who was diagnosed with it and felt 'devastated' by the dx. S/he also had a bi-polar dx and posted via Stone's feedback button, several years ago. I hope they are all queuing up to volunteer as guinea pigs for any clinical trials.

Meanwhile it still bothers me that neurologists are allowed to lie to patients when making this dx, so we don't hate them. (See 'limits to truth telling. Drs communications with people with conversion disorder' ffi). I see no one mentioned that in the Guardian article

[Lady4]

Where was the post?

FND isn't always caused by trauma, it can be a factor but doesn't have to be, sometimes there are no known triggers.

It can also be a cascade of events, with the smallest (maybe insignificant) pushing the CNS over the edge towards imbalance, increased neural activity and symptoms.

It can also be due to falls/concussion and surgery errors, the list is endless.

[GrEeNbEeNs in reply to Lady4]

My answer to that is who done the tests to prove that all these things can cause FND and how was it possible to do tests if nothing shows up in an MRI scan that's the point I was making in my last post,you have your beliefs and a lot people have there's. I never question anyone on this forum when they put a post up as to why they think they got FND it hasn't been proven so people are going to think differently which thier aloud to do. I put posts up asking people for thier opinion on if they think it can be caused by trauma,I also put posts up about it not being proven how we get it.As I've said how can they tell how we got it if nothing shows up on a MRI scan.I don't dictate to people how they got it i'm not a neurologist and until there is genuine proof on how you get FND then I will stick to my beliefs.Take care.

[jlbiggs in reply to GrEeNbEeNs]

FND does show up on FMRI, they just don’t do them!

[Smich in reply to jlbiggs]

I understood FMRI can show all sorts of abnormalities, but I would ask how many FND patients have had this scan for them to say FND shows up as a brain abnormality.

If we are to believe trauma is the cause of FND, are they saying emotional trauma showing up on scans? I would like to know how many have had this scan & then told they have FND from the results.

Also, if an FMRI can detect FND, then they know what it looks like & have a way to diagnose, so this would be massive news. HEADLINES!!!!!! FND CAN NOW BE PROPERLY DIAGNOSED USING AN FMRI.

Or maybe not, as it could mean ruling out millions of people misdiagnosed & loss of funding🤔