I found this interesting.

[210272]

What do you think about this?

mdpi.com/2227-9032/7/4/114/htm

[DNE92 Moderator FND Hope UK]

Hi. You find good, interesting articles about things not FND. Thanks because I have spent over 6 years constantly telling my FND expert that I am NOT converting my trauma. Think because I have a co-morbid mental health disorder it's easy just to write me off from the beginning with FND - although it was an interesting journey as the names I was given kept changing until 1 day a copy letter said FND. I was like "what" I was told I had Motor Function Disorder (which sounded like a physical thing). I've just got worse over those 6+ years. I found a very interesting article about how doctors tell patients that it's psychological. I will find it again and post. Tells about the "code" terms doctors use between themselves.

Thanks.

[210272 in reply to DNE92]

You're welcome, Louyse. It's always fun when the academics catch up with what patients have been saying for years I think the 'speaking in code' article may be the one someone with vestibular migraine sent me, after being misdiagnosed with 'FND' for 15 years. I'm not sure if we're allowed to post it here without giving the Creative Commons credits but anyone can find it by googling "The function of 'functional'". However when it was posted here before there were comments that it was an old paper so if you have anything more up to date I'd be very interested to read it

Totally agree that with a co-morbid mental health condition it is easy for some doctors to ascribe all symptoms to that, especially when they are under so much pressure, time-wise. I think this article will empower patients and doctors to shift their thinking so that our treatment plans reflect our needs and priorities. And, with any luck, create an open conversation where no-one is speaking in code

[DNE92 Moderator FND Hope UK in reply to 210272]

Will have a look at the date.

Cheers

Lou

[Dave_1]

This is a very interesting post. It includes what I have always believed that we must treat each person as an individual case and also holistically. And as the paper states re-educate all those involved.

In another post I was asked what I would include in any University education .

For all science, medical, pharmacology, biomedical, psychology, psychiatry, I could go on.

1. PUT IT ON THE CURRICULUM

2. INCLUDE IT AS RESEARCH AT LEAST FOR POST GRADUATES

3. HAVE SHORTER COURSES FOR THOSE CARERS AND HEALTH AND SOCIAL CARE WORKERS IN THE COMMUNITY. (Or during their training as would be for Dementia which has well over 100 causes)

Thanks for the post, cheers

[210272 in reply to Dave_1]

Dave_1 the medical/biomedical students I'm in contact with (especially those who are doing or have completed their neuro module) are all aware of 'FND' and many of them are aware that it is being over and misdiagnosed too. So that's a start.

As for research, I gather that Jon Stone has funding to do some research into 'FND'. What I'm not sure about is who is doing the audit for the necessary Patient, Public Involvement so I've asked him since Dawn (the UK 'FND Hope' liaison person) hasn't been able to answer my question about this. Jon welcomes PhD students, so that's already covered too.

I'm unclear about how shorter courses for Health and Social Care workers in the community would benefit anyone so would be grateful if you could give your reasons for this suggestion. TIA

[Dave_1 in reply to 210272]

Hi again, I am pleased you feel that all bases are covered but as much as I respect Jon Stone and all those taking the initiative it requires many more to treat FND likewise, with the same passion. It is the only way that we will get a result to what exactly FND is or is not.

Ask most of those being diagnosed and they will tell you that they get blank faces when they say that they have FND. So your bio friends are doing well, not fed through yet.

Regarding care for those diagnosed and living in the community needing assistance. That should be dealt in a seperate post. Maybe that is a post that would be interesting too.

There is a long way to go in understanding FND and FND as far as I am concerned is a REAL condition needing REAL support.

Thanks again for your interest in FND

[210272 in reply to Dave_1]

Dave_1 - I don't feel all bases are covered; how could they be since medical knowledge is still expanding? Meanwhile I'm curious about why you would respect someone who lists 'hysteria', 'conversion disorder' and 'psychogenic disorders' among their research interests, alongside 'FND'. Do you think those are real conditions too?

[Dave_1 in reply to 210272]

You listed his Jon Stones name in your last reply as someone who was already doing research when I mentioned we needed more.

And yes you cannot separate mind and body so the way we think will and does effect our health and wellbeing.

I will not be responding to you further as you appear to have difficulty with others views when they do not coincide with yours.

[210272 in reply to Dave_1]

Interesting - I thought you were up for dialogue that included different viewpoints, but maybe you're not, after all. I have no difficulty with engaging with the views of others whether they coincide with mine or not yet you perceive that I do, which is also interesting. Please can you give me an example of when you think I've done that on this forum?

I assure you that I can separate mind and body. My body is fairly severely broken but my mind is in great shape, thank heavens

Yes, I listed Stone re 'FND' and am particularly interested in his strategy for reducing the over-diagnosis of 'functional' conditions, as mentioned in this article. Do you know what it is, Dave_1? If we want the focus to be on people who are deemed to have 'functional' conditions, it's going to be easier to achieve that if the research is not diluted by those that don't, but have still been given this diagnosis, possibly due to confirmation bias.

[Hidden in reply to Dave_1]

Yes everything is organic - I totally agree with you on this premise. But the way we feel due to biomedical conditions will affect the way we feel psychologically Dave_1.

So why do folks like Stone et al think they can possibly determine which comes first, chicken or egg, when clearly they can’t? Because leaving people with this Guantanamo Bay of diagnosis’s saves the NHS and healthcare systems around the world, a lot of money in research, investigations and treatments plus out of area referrals to the few existing centres of excellence.

The reason I don’t believe in “FND” is because I don’t believe anything is “functional”. As a former neurologist who now invents robots for a living explained to my son - who works in artificial intelligence - humans aren’t robots with hardware and software? We are 100% organic. And in terms of knowledge we aren’t even at the foot hills where understanding the brain is concerned.

So it takes a lot of arrogance and a scary disregard for mental health and for rare biomedical conditions and drug reactions to diagnose anything at all as “functional”.

Far from bringing awareness of “FND” to schools and medical students - we need to put and end to the premise of “functional” eg neither mental health nor physical health and stop deluding ourselves that any symptoms, from “IBS” to “FND” aren’t organic illnesses of mind and body. Then there are food and drug allergies, autoimmune diseases, viruses, vestibular, bacterial infections - any number of things, environmental, genetic, congenital that can cause neuro symptoms. All neuro symptoms are organic - “functional” doesn’t exist.

[Dave_1 in reply to Hidden]

If you don't believe in FND why keep posting on FND HOPE.

I do not want to argue any more, I have enough on my plate.

We are not robots and believe we are more than a piece of organic matter.

If it were not for the like if Jon Stone etc would so many people around the world be investigating it.

By constantly undermining people's belief in their diagnosis they will continue to ask for and receive all sorts of scans and tests which in itself can and does cause real organic illnesses.

I think we should agree to disagree and leave it at that.

More research is needed and being so dogmatic is not helpful.

Please accept this point of view and have the best Christmas you can.

Cheers

Dave

[Hidden in reply to Dave_1]

Due to having a multi systemic disease I use lots of communities Dave_1. I have as much right to be here as anyone else.

I don’t post and I never comment on your posts or comment on posts of others who accept their diagnosis.

As it happens I was diagnosed with “FND-overlay” just 18 months ago and this has seriously delayed other investigations I should have been having all along. Along with quite a few others here our misdiagnosis of “FND” has actually been very harmful and of course we don’t want this harm to keep happening to others.

Unfortunately you don’t have to believe in “FND” to get diagnosed with it.

And the paternalism of the NHS being what it is - my diagnosis hasn’t officially been redacted - so it still sits on my notes along with others such as UTI sepsis (medication induced pancreatitis), functional left sided hemiparesis (Tramadol, Gabapentin and Pregabalin) and purpuric scurvy (medication induced Vasculitis).

By telling me to go elsewhere and not express my opinion about so called “Functional” disorders here, you are saying that the wellbeing of people like yourself, who accept and actively wish for greater awareness for “functional” disorders, is more important than it is for me to highlight the trauma and harm caused by a misdiagnosis of a condition that can’t be medically proven by exclusion and is always going to be very controversial and overdiagnosed by some doctors with their own agendas.

As it happens I stay here, not because I want to, but because I know that the risk of people ending up here, in the wrong part of town, under investigated and disbelieved by neurologists and GPs and others, is a real and potentially very serious risk. I’ve been able to respond to quite a few people who have described symptoms of my autoimmune diseases, but have been told they are due to “FND”. My disease can only be diagnosed by somewhat invasive procedures which do make them definitive at least. But there’s always the risk of having active systemic disease confused for “functional overlay”.

If i was still in the position I was in a year ago, or even 6 months ago, then being told that the bigger risk was of me being over investigated than under investigated would have meant a continuation of the nightmare that I’ve been inhabiting for the past 5 years with my neuro symptoms. Thank heavens I’m a tenacious person who was able to do my homework, educate myself, push hard and find great clinicians who believed me.

It’s been a hugely long and unnecessarily traumatic journey due mostly to 3 Scottish neurologists with their own “functional” agendas and hopelessly overworked rheumatologists who assumed that the neurologists knew their jobs.

These neurologists seem to stick together and to their “FND” rock like limpets and it’s been a nightmare getting away from this F word for me!

It’s not about investigations - it’s about neurologists having the humility to admit that they don’t know enough about the many possible causes of neuro symptoms to diagnose their patients with these non structural, non neuro inflammatory symptoms.

So is having a name for your symptoms important enough to you that you are prepared to let many others try to navigate the world misdiagnosed with “FND”?

I come here now only to raise the flag for rare autoimmune diseases like mine which are seriously under investigated and underdiagnosed. The chances of neurologists identifying most of these diseases is pretty low. So I want them to stop playing at psychiatry and psychology and stick to the jobs they were trained for. For example, MND is a terrible disease, and desperately needs more research and a cure. Surely this should be a neurologist’s priority?

To me the neurologists who diagnosed me and others with “FND” are abusing people’s human rights. And I can’t just stand back or stop following and turn a blind eye to human rights abuses when this has happened to me too.

Rather I need to keep flagging up that most of the symptoms listed on Jon Stone’s Neuro Symptoms website could all equally apply to complex systemic diseases which are terribly hard to diagnose.

What I want is for much greater research and awareness to go into very underdiagnosed diseases (as opposed to disorders) like mine (Sjogrens, Hashimoto’s, Raynaud’s, small fibre neuropathy, Erythromelagia, drug induced prediabetes plus Lupus and RA, Vasculitis and Hughes - which are all now being far too often misdiagnosed as “FND”. There are many others besides but these are the ones I know most about.

No more from me now Dave-1 - I’ll wish you a good festive break and will stop flying my flag for the next few weeks at least.

[Lolastar]

It comes down to actually paying attention to us. Stop looking us as numbers and listen to what we are saying. Thanks for sharing.

[210272 in reply to Lolastar]

Absolutely Lolastar. Also if they could stop with the gaslighting/euphemism stuff, that would be cool