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Functional Neurological Disorder - FND Hope

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why are dr’s so quick to say you have fnd

Somewhere-intheuk profile image
52 Replies

my first post in the year 2022 I got took to hospital with stroke like symptoms, they did the test no stroke but got worse in Hospital but the same afternoon a consultant come in with 2 junior doctors and within 30 seconds he said you have FND just like that no tests nothing, the next day I was told I am going home I said I am worse can hardly walk they didn’t listen 3 hours later the junior doctor come with the letter and he apologised to me he said the consultant was wrong to say that but they needed the bed so you were the easy option, I went later that afternoon holding on to my daughter I seen him again he put his head down and walked on,

Gradually I got worse seen a consultant as a out patient she said your report said FND so she examined me and wrote the report but saying I had FND I said why is my walking my balance loss of use of the left arm can only eat my dinner with my right arm her attitude was you are 59 what do I expect, my GP said the report said you have FND there is no treatment and it is all in your head and not interested, so paying to go Private hoping I get some answers

I have loss of use of one arm

My walking and balance is horrendous

My eyes I have double vision and in the summer I have never felt so bad

Loss of appetite

Difficult in chewing

In bed by 6.30 every night and sleep during the day

Shortness of breath

Cannot get up of sofa

Totally exhausted

Pain in chest

Tingling in left hand

My memory is getting worse

Plus many more I ask for help all I get is you have FND and I am 59

Why do I carry on if they are not interested still fighting but you get tarnished with FND within 30 seconds

Let’s hope this private consultant helps

A retired doctor thinks I have MG

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Somewhere-intheuk profile image
Somewhere-intheuk
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52 Replies
Jofisher profile image
Jofisher

If you live in the U.K. go and see Professor Mark Edwards I believe he’s working at kings hospital now. Also look up fibromyalgia and I have fibro and FND and I presented at hospital with trike like symptoms they said I hadn’t had one and seven years later I needed an MRI and it showed that I had in fact had one. I also have chronic migraines now as well.

Lady4 profile image
Lady4

Hi, I am guessing you had a CT scan as this seems to be the "gold standard", although it comes with its risks on younger patients (which a young doctor advised me), following what I could only assume was a "drop attack" and a blow to the back of head with temporary memory lose.I read, way at the beginning of our journey (my son got diagnosed last Summer, that and CRPS), that FND is "a diagnose of exclusion", therefore if there is any structural damage to the brain then it must be psychological.

The comment about 59 is ridiculous, 89 maybe.

I considered going down the private route to see a neurologist but we did eventually get to see an NHS one last July, no letter following consultant appointment and no correspondence re "talking therapy" (apparently you don't get any acknowledgement, so your left in limbo again). On a positive, at least with a private neuro appt (prob around £350-£400) you will get a written report quickly and they can refer you back into the NHS system as a friend of mine did with another condition.

FND sometimes (not always) has triggers, can you think back to see if anything may have triggered the start.

Hopefully, when you get some answers you can start your journey to recovery. I know its a rollercoaster and stressful, be kind to yourself as some of your symptoms "like loss of appetite" may be because of your stress levels and your feeling of giving up, don't stay strong.

Hugs xx

Corgi_Gal profile image
Corgi_Gal in reply to Lady4

That's just it. FND isn't supposed to be a diagnosis of exclusion. You shouldn't get a diagnosis of FND unless they find definitive evidence not because they can't find an obvious answer to explain your symptoms. Too many doctors are way too quick to throw you in the "too hard" basket and walk away. I've read that true FND is actually quite rare. The fact that doctors are using it as a throw away diagnosis is depressing, discouraging and quite frankly infuriating.

Keep pushing for answers. Go private if you have to. Demand they remove the FND from your medical record.

Somewhere-intheuk profile image
Somewhere-intheuk in reply to Corgi_Gal

100% spot on ever since a consultant told me I had FND within 20 seconds because they wanted my hospital bed every other consultant and DR is using it so so wrong

I have argued but they are not interested I will continue to fight to get it took of my records

You take care

Somewhere-intheuk profile image
Somewhere-intheuk in reply to Lady4

Morning Lady4

How are you today me a bad day took the dog a walk totally exhausted fell over and that’s with holding a stick, you get up and carry on

Yes had a MRI twice now the consultant said there is something in the back of the brain what’s getting bigger but nothing to worry about but surly if something in the brain is getting bigger it is putting more pressure on other parts of the brain but they are not interested in that, the last time I went in July this year I went in 20 minutes late shut the door then a bang on the door the woman opened it and said to my consultant are we going for dinner she went and that’s when she said you are 59 you are getting old good bye time for my dinner so I went in at 12.50 I was out by 12.53

When you asked if anything could of triggered it

I used to do a lot of voluntary work by doing events for the kids dressing as Santa meals for the elderly and have looked after a nature reserve for 25 years all on my own and have rescued over 450 swans

Apart from that a good child hood always been laid back easy going don’t get stressed

Hope your son is ok and you have still got a smile on your face it is not easy for any of us but like you say take one day at a time my dog is the only one who is keeping me going at the moment I do look up at the sky hoping my number is next at times with the way I feel just frustrated that no doctor or consultant are interested xx

Lady4 profile image
Lady4

Morning

I am okay thanks just about to start morning school routine, so will need to answer in parts.

"The consultant said there is something in the back of the brain what’s getting bigger but nothing to worry about" - did they not say what? Did they state this in a letter? Its the fear of not knowing and feeling abandoned that makes this 10 times worse for sufferers.

As for diagnosis of exclusion, think I read that in a medical link that was shared, think it referred to a reference book Drs use, another user on her maybe able to elaborate more when she sees your post.

Sorry you are having a bad day (maybe walk with another dog walker).

Take care xx

Lady4 profile image
Lady4

Check out user 210272, read post medical links, enlightening.

210272 profile image
210272 in reply to Lady4

Thanks for the validation, Lady4. I am well aware that some of my posts are out of date, partly because the diagnostic criteria for FND keep changing and some of it is 'open to misinterpretation' according to Jon Stone (eg his 'top tips' stuff about healthy organs being removed which he doesn't substantiate with relevant statistics).

It bothers me that the 'functional' means 'hysterical' and that it is used to infer one meaning to patients and another to our doctors (the ambiguity is deliberate) since that mitigates against the Patients as Partners era of medicine and makes 'functional' an unscientific term because of the ambiguity. Here's the link: dx.doi.org/10.1136/jnnp-201...

Lady4 profile image
Lady4 in reply to 210272

Hi, read again but recall you sharing previously and selecting "non organic" as my answer, because if a lot of our responses (symptoms) are due to "flight or fight" responses then that is learn't behaviour and maybe undone.

210272 profile image
210272 in reply to Lady4

I hear you but the 'freeze/flight/fight' response isn't present for all people with a FND dx and, unfortunately, patient opinions were not sought in this review. I think Stone is now saying that the 'organic'/'non organic' debate is pointless because the symptoms happen in people's bodies but I could be wrong.

Also Perez says it's 'common' but if that was the case we'd be on season 6 (at least) of the FND World Summit (like the Migraine World Summit) rather than the current situation whereby the FND Society hold meetings every two years and all the questions from patients (and professionals, in some cases) are moderated.

In a paper I saw about FND in a collection of papers about Long Covid they said that demonstrating distractibility was important when making the FND dx in neurology settings but I can't understand why having distractible symptoms would mean someone automatically has a DSM dx.

Meanwhile the FND is a feminist issue paper has been reissued and none of the previous rapid responses show up. Hmmmm.

Lady4 profile image
Lady4 in reply to 210272

I think the freeze/ flight or fight response is, but identifying the trigger is the hardest (if any) as its in the subconsciousness.Haven't read the feminist paper, have you got the link, although think I read it was more common in women.

Maybe the distractible symptoms (ie leg spasms, as I used that technique) is proving its structural (like an Epileptic Attack, something that shows up on EEG scans and is continual waves,).

Does my chain of thought make sense?

210272 profile image
210272 in reply to Lady4

We may have to agree to disagree re the freeze/flight/fright response but it doesn't matter because it is reasonably easy to get back into balance with the rest/digest/repair mode and any decent doctor would be able to describe the various methods of doing that.

Not sure about the structural vs functional debate since we know there doesn't have to be structural damage for people to experience migraine attacks (for example) so that debate should have been over years ago and probably would have been if patients had been involved in it. In some cases (eg after head injuries) FND is structural, for sure, but not everyone with a FND dx has had head injuries (although they may not have been asked so may not have reported them, if they had had one or more) and my concern about the distractibility deal is that it seems a very odd reason for giving someone a mental health disorder diagnosis, via DSM.

Yes - any train of thought about all this from patients, whatever conditions we have or don't have, makes sense to me. I doubt we'd ever reach consensus because of the rich and varied tapestry that is the human experience, but I like fora where discussions can happen. Which isn't often the case with the FND Society, unfortunately.

Here's one iteration of the Feminist paper which has the rapid responses. I like Prof O'Leary's writing and when something was published about one of the FND subtypes a few years ago she tweeted 'FND ed is terribly reckless, so practice is reckless' which nailed it, for me. 10.1136/jnnp-2022-330192

Lady4 profile image
Lady4 in reply to 210272

Agreeing to disagree is a healthy compromise and I am but a novice.I would hasten to add their recklessness ruins lives.

I don't think the distractibility can be the one and only reason for dx. Pretty sure I read the patient had to have several symptoms. Although not everyone is singing from the same hymn sheet.

I just read the NICE guidelines rationale, how crazy is that.

Text
210272 profile image
210272 in reply to Lady4

Yes, their recklessness ruins lives, for sure. But you nailed it - they are not all singing from the same hymn sheet which causes endless confusion for patients. Some articles say 4-5 per 100K, others say 12 and Stone vacuuming up all the 'dizzy' people and people with brain fog to justify the 16% referral deal is not OK. As for the 'distractibility' deal I agree that this alone shouldn't get people a spot in DSM especially since the North Bristol Trust (which includes Southmead Hospital) includes photosensitivity as a symptom/sign of FND and I've yet to meet anyone with migraine who has been successfully distracted from that.

I had two consultations at Southmead sleep clinic and the neuro-psychiatrist there wrote 'functional' in my notes (not having mentioned it during the first consultation) and when I asked her what it meant she said 'medically unexplained symptoms'. Hmm, no, if that was the case a fMRI scan would be called a 'medically unexplained symptoms'MRI scan and it isn't. I find it interesting to ask different health care professionals what it means since they often look shifty and rarely give a straight answer. One lovely consultant at the eye hospital said 'oh that just means 'a change in function, not structure' - all the freudian stuff has been largely discredited' So I said 'hmm, 'a change in function, not structure' eh? Do you mean like when someone gets a migraine attack?' and she went a funny colour as the penny dropped. As it happens, that's the definition they give at Southmead (or was, last time I checked) and, to me, it's a bit of a stretch from the notion that there's no structural damage to the notion that because there's no structural damage, the patient has a psychiatric condition.

So much for a term ('functional') that was chosen partly because it's 'easily used with patients' eh??

Lady4 profile image
Lady4 in reply to 210272

Yet that article you shared says it cannot be functional alone, confusing for sure and the confusion starts from the top. Haven't FND sufferers got a lot to deal with already.

210272 profile image
210272 in reply to Lady4

Yep. And I have no idea which bright spark advised doctors to say 'I believe you, why don't you believe me?' if someone questioned their FND dx. That's passive/aggressive bullying where there's a power disparity and, as such, it is very bad advice.

Lady4 profile image
Lady4 in reply to 210272

Maybe thats there bad attempt by validating them, the first step.

Lady4 profile image
Lady4 in reply to 210272

Thanks, thats a really interesting article, this bit:FND is the second most common reason for patients to attend neurology clinics, estimated to have an incidence of 4–5 per 100 000 and therefore to be present in the population at a similar frequency to multiple sclerosis and Parkinson’s disease.

Seems to be higher now, as I read 2000 and the above equates to nearly 5000.

Also this bit I found interesting:

Signs which have been proven to be reliable in motor FND include Hoover’s sign, hip abductor sign, drift without pronation, identification of typical FND gait, and ipsilateral weakness of the sternocleidomastoid with hemiparesis. In functional (dissociative) seizures, the clinical signs of active resistance to eye opening, flutter or blinking on eyelash rub, or change in the seizure semiology in response to others during an episode have 100% specificity.

Its an interesting read and a recent article on FND in general.

I had to add this bit (at the end of the paper) and I say here here:

"We urge planning and funding for better and more universally available FND treatment services, and a universal upskilling of clinicians, so that people with FND can finally receive the treatment they require and deserve."

Lady4 profile image
Lady4 in reply to Lady4

I have to add that I wasn't impressed about the lack of graduates choosing FND as their Speciality as we definately need a fresh perspective and approach to updating the care packages, based on modern day living.

210272 profile image
210272 in reply to Lady4

Current FND upskilling in the UK is a hour long training programme for speech therapists, physiotherapists etc which costs £50. This is seen as undervaluing an already underserved patient population. On the upside, there is a pathway for people with FND in the UK but since no neurological conditions are included in the main conditions list in the UK, getting onto that pathway may not make much difference.

Lady4 profile image
Lady4 in reply to 210272

Hi yes saw that, although it should be free, at least then others would do the training. Maybe it should be free for patients and carers, at least then we could self help. Have you a link to the list.

210272 profile image
210272 in reply to Lady4

No but you might be able to get it from Dawn. I don't think a one hour training is at all appropriate for a neuropsychiatric condition although I agree that self help is important. Unfortunately a lot of the information about the subtypes on Stone's self help site is out of date (eg it doesn't include the Cochrane review of medications) yet neurologists are still signposting people to it.

Lady4 profile image
Lady4 in reply to 210272

Again had to google and found Cochrane library and googled FND. Is there a list of medications they think have a connection to FND as pretty sure read some previous comments. You also mention "Dawn," - can you elaborate please.

210272 profile image
210272 in reply to Lady4

I was referring to the FND subtypes (eg triple PD which I call 'triple my/our workload' since there are so many issues with it that concern me and have for years, all of which I've passed up the line, repeatedly) re medications and I don't know much, if anything, about medications for FND. Dawn is the driving force behind FND Hope UK and she's ace.

Just been looking into DSM some more and it's weird. ThriveWorks doesn't list FND but they do list Extreme Poverty, Homelessness, Low income, Imprisonment or other incarceration and things like lack of access to food and safe drinking water. Weird, or what?? (rhetorical question).

Lady4 profile image
Lady4 in reply to 210272

Triple PD - Post Depression? What is it you do? (if I can ask, you seem so informative).I guess I should read some of the Hope website contents more, I struggle to catch up here sometimes though but like to offer help or refer to helpful links when I read the cry for help posts (ie, members that have been floored by the diagnosis, like I was when I re fived it for my son last Nov).

Guess I will need to google ThriveWorks but a lot of those that you list would mean a great deal of stress, which is a major trigger.

210272 profile image
210272 in reply to Lady4

Yes, they could be triggers for some but they are listed as mental health issues which feels wrong, to me.

PPPD is an umbrella term for 'dizziness' and if you google PPPD in the Daily Mail you'll see a classic case of Mal de Debarquement Syndrome (MdDS) that was missed and could have been treated so that the gentleman concerned might not have had all the panic attacks, depression and could have avoided medications and the need to see a psychiatrist. Even the researchers are not happy with the term PPPD (which is not a psychiatric condition but is in the FND subtypes - hmmm) and it is being massively over diagnosed, even amongst people who don't meet the current criteria for it. My list of concerns about it are very long and get longer by the day but currently I am more concerned that women with MdDS are being misdiagnosed with FND at an alarming rate.

My role is varied; I am one of the admins for the UK MdDS group (Staab and Stone - and a few other men - think everyone with MdDS has FND, I don't because most people with MdDS wouldn't meet the criteria for a DSM dx) and I also do a fair amount of work in the UK rare conditions space (as well as my personal work). I am in remission from MdDS and think this remission will stick.

No one should feel floored by a FND dx if it's well given (Genetic Alliance UK have a really good 'good diagnosis guide' for people with rare conditions) but far, far too many people are being given 'wastebasket' FND diagnoses or are being diagnosed and discharged, leaving their GPs to pick up the pieces. So, like you, I try to do advocacy work here, when I can.

Lady4 profile image
Lady4 in reply to 210272

Yes, I recall you mentioned you were in remission, I hope it stays that way too.I am not really an advocate just share some of my experience and guide others, especially newly diagnosed, to legitimate sites with information I have found useful, a lot of what you have shared, as many don't have time to read a whole article, that/or it is too much in one go. We need time to process.

Like many of us, I am left in the dark and trying to help my son but he is a teenager and doesn't really help himself at times (or so it seems) and all that I advise him, sometimes falls on deaf ears (or so it seems).

To be honest, I am at a loss and feel like I need to address it from beginning. Three falls last week, we started with physio and strengthening the ankles with Thane bands, I guess it can't hurt for him to do a few more exercises. Not sure he agrees though.

This week, stabbing pains in the head and I have taken him in to school, collected and back again etc (exams), giving him time to rest inbetween.

I am also going to get bloods checked next week for iron, vit D (both last time low) plus B12 and probably a private physio (previously contacted) as we can no longer self refer.

He has good days (when everything is fine and we can both relax) and bad days (symptoms, vary and we play the day by ear).

As a parent though, I always worry am I doing the right thing / have my other priorities in the right order as balancing a lot (some self inflicted :-) but with an end goal in mind).

Lady4 profile image
Lady4

Ok, routine changed, a third fall this week (exams), so sitting with a cuppa re-scheduling my day and letting him sleep.I guess your appt by Consultant, wasn't a specialist. If you read my posts, you will read part of our story and maybe even find some useful links, especially the handbook written by a University Graduate (link on FND Hope), although think its not a free resource now and is used to raise funds for the charity, possible free on kindle subscription.

Happy to hear you have had a lovely childhood and enjoy volunteering and helping others both human and animals. Unfortunately, there isn't always a trigger but maybe they got it wrong.

I would definately get a second opinion re "something in the brain getting bigger" and see if your private consultant can request images to put your mind a rest.

Breathe ... xx

Lady4 profile image
Lady4

From the NHS website:"A diagnosis of FND should be made because you have one or more clinical features that a specialist can recognise as typical of FND. It shouldn’t be made just because scans or tests for other neurological conditions that have similar symptoms are normal."

Kinda says it all :-(

The symptoms of FND (I think another user mentioned over 200, I don't know where that figure came from) are similar to other neurological conditions.

Somewhere-intheuk profile image
Somewhere-intheuk in reply to Lady4

You are a star thank you for all the information but it seems to me they are saying FND to a awful lot of people without going through the process

They are going for the easy option and the people have to suffer I cannot accept the diagnosis as my head is telling me there is something else wrong it is how they just brush you off

If it is a different condition it will only get worse and be harder to treat down the line,

Not one person has explained FND to me they just kick you out the surgery and you are left to suffer take care x

Lady4 profile image
Lady4 in reply to Somewhere-intheuk

Your welcome, you have to look on the positive, if is in something else "physical" then there will be help out there and referrals but go see the nduro first with an open mind. I would hesitate to guess that some of your symptoms are from the anxiety of it all. Practice meditation and mindfulness, brain retraining may have a part too (CBT, reinforcing positive neuro pathways).Tomorrows another day and how does the song go "the sun will come out tomorrow".

Hang on in there xx

Lady4 profile image
Lady4

From FND Action: (Guidance for professionals):

How is a positive diagnosis of FND made?

While it is reasonable to raise the possibility of an FND diagnosis with the patient, patients with a suspected

diagnosis should be referred to a Neurologist for a specialist assessment.

A diagnosis of FND should be based on

positive clinical features.

Patients with FND often have many complex symptoms, so it is important to ask about motor and sensory

symptoms, fatigue, pain, sleep disturbance, memory and dissociative symptoms.

FND often co-occurs with other

conditions, most commonly neurological illnesses, and under these circumstances may be referred to as

‘functional overlay’.

Despite the lack of NICE Guidelines for FND at this present time, the clinical pathway for diagnosis should start

with a Neurologist making a rule-in diagnosis.

Lady4 profile image
Lady4

And finally, 100% go for the top, a Neurologist Consultant, think when researching private, I found a great one in London. Pretty sure you could read their bios, qualification, experience and field interests.

Shadow35 profile image
Shadow35

Hi. I got the same diagnosis and i fight it. Next week i'm going to see a rhumatologist. He saw fnd in my file and a consultation in psychiatry. He was suprise no testing was done. My leg was blue when i wasn't able to walk. It last 48 hours in hospital. I had many more symptoms during 2 years. Now it's more inflammation and it's react to prednisone and nsaid. It's looking like i have spondyloarthritis. my symptom look a lot like yours last years. You have to continue fighting. Did someone check your eyes?

Somewhere-intheuk profile image
Somewhere-intheuk in reply to Shadow35

Hi Shadow35 proud of you for fighting it I really hope you get a proper diagnosis and they can give you the right treatment and you get better, it should never come to this in the first place they can say within 20 seconds you have FND I feel like I have MG and going to see a private doctor who specialises in that in December

No one checked my eyes but one eye has got worse and the hot weather really affects me my eyes especially

Take care good luck

Lady4 profile image
Lady4 in reply to Somewhere-intheuk

I read that the Summers are harder for MG (googled it), its amazing how many new medical terms I am learning on here, hope they give you the support you deserve.

Shadow35 profile image
Shadow35 in reply to Somewhere-intheuk

For now i think the best to help doctor is to have many diagnostic for different problem with different specialist. To have physical proof. I now have proof my eyes are inflamme, my achille tendon, my skin and my fingers have inflammation. They can't deny it so they have to find a solution. But at first it was a lot of different problem. I had a psotis that is i think gone unless i'm very unwell. We just have two eyes and if i were you i wouldnt wait to get them check. A lot of thing can heel like muscle but eyes sometime wont...and myasthenia can be diagnose by an optometrist sometime.

Lady4 profile image
Lady4

What county in the UK are you?

Somewhere-intheuk profile image
Somewhere-intheuk in reply to Lady4

The midlands sunny warwickshire

Lady4 profile image
Lady4 in reply to Somewhere-intheuk

Warwickshires Health Trust is supposed to be outstanding.

Pickle500 profile image
Pickle500

I was also misdiagnosed with FND but not in the same extremes as you. I am sorry to hear that the Doctors used FND to oust you from a bed you needed.

I'm sad to say it but the medical system is basically finished. We cannot hope to get the same level of care we used to. That is my experience since it took a leading neurologist in dementia and Alzheimers at London's leading Neurology Hospital to blatantly lie about my undiagnosed B12 deficiency to protect the livelihood of another Doctor. And leave me in continued poor health for the rest of my life.

She knew there was nothing I could do since I never got diagnosed. And so I followed through with a referral for FND and was offered antidepressants. A complete farce and a waste of my life.

If the best neurological hospital in the country chooses to misdiagnose patients with FND then they'll be doing it everywhere.

Don't trust your Doctors. Advocate for yourself. Get to the Doctors early with your complaints and DO NOT accept their fob offs or 'somatic issues' or stress.

Investigate B12 , B9 folate, B1 Thiamine deficiencies and if you can afford to go to a Functional Medical Doctor then do.

You may benefit from regular B12 INJECTIONS. You can get them from overseas suppliers.

I'll never trust the NHS or any Western medicine again.

Somewhere-intheuk profile image
Somewhere-intheuk in reply to Pickle500

I am so sorry to hear that it is so frustrating knowing they will do anything to have a easy life and look after themselves and in the mean time we have to suffer I asked for medication but got told no so every day I am in pain so stiff can hardly move

Like you say the NHS is finished

Good idea about B12 I am borderline diabetic but no tablets because I am only borderline it is so frustrating I ended up walking out one doctors appointment in tears he just sat there looking at the ceiling I got up and said what a waste of time that was and went 20 minutes later he phoned asking if I wanted another appointment with him you can imagine what I said

We will keep on fighting together never give up I won’t take care

Lady4 profile image
Lady4 in reply to Somewhere-intheuk

I am not sure the NHS is finished but broken for sure.I was shocked to hear my sons consultation notes were prob still in draft (July this year) and the Neurologist would have to do from memory and something along the lines did I have notes I could email in. Luckily referral done same day. Told we would just get a call....

Pickle500 profile image
Pickle500 in reply to Somewhere-intheuk

Please do carry on fighting if you feel you will get appropriate medical care.

FND is regularly used by neurologists to dump B12 deficiency and Pernicious Anemia sufferers into. It's not so much that it's 'lazy' it's more that it's a cover up. They don't want to expose their negligence and lack of training in nutrition.

And we should all be aware that medics know nothing about nutrition.

Functional medicine is a more useful route for someone like me with gut problems. The NHS failed to address them and patronised me the whole way that 'I was too young' at 40.

Western medicine misdiagnosed my father's cancer 3 times before it was terminal so forgive my despondency. I simply do not see the point of it

Radical overhaul is long needed. No longer should we avoid the GP for fear of condescension. In my case, it was their fault, and the neurologist gave me FND to cover up THEIR negligence.

So either way you're screwed.

I gave up and self treat.

Shimmyaway profile image
Shimmyaway

It sounds as if you are having a very difficult time indeed and frustrated by the system ,lack of research into FND and no clear guidelines for treatment...something we all regret.

I have tried the 'education route' for my GP. Help the doctor to help you. ..there are so many conditions they come across. I referred mine to the BMJ article of Jan 2022, that gives an outline of the condition, treatment options etc. She did not mind and admitted she had had only one previous case in her career.

There do exist NICE guidelines for FND, laying out possible treatment pathways. They were newly created in Feb of this year.Take them to your health provider... show them what the next steps should be.

In addition, there is a national recognition that health professionals are under informed about FND, and to this aim there is remote training available at St George's Hospital, London (home of the UK fnd guru Mark Edwards)..take the details of the training to your health provider. You will find this info if you google 'futurelearn fnd'.

Best wishes

Lady4 profile image
Lady4 in reply to Shimmyaway

Guidelines are Jan 2021, surely an update should be made. I think the referral process that is described at the back of the workbook for children and young adolescents downloaded from the FND made sense, so will compare when I get five.

There is also a specialist at the:

The Rosa Burden Centre is a rehabilitation centre specialising in neurological conditions especially FND. Located in Southmead Hospital in Bristol.

The centre uses 1 method of treatment that is specific to FND. That is a 3 week stay with the use of a Multi-Disciplinary Team (MDT), usually for severe cases.

My friends daughter works at the hospital and mentioned just yesterday, they are all well educated. They also have an outpatients clinic.

Just needs to right person to refer.

Lady4 profile image
Lady4

Ps. If there is something in the back of your brain that should been monitored by regular MRI scans.

Somewhere-intheuk profile image
Somewhere-intheuk in reply to Lady4

Apparently out the two mri’s I have one in 2021 and 2022 it has got bigger but nothing to worry about she said but didn’t say what it was as she needed to go for dinner something near the Cerebellum

Lady4 profile image
Lady4 in reply to Somewhere-intheuk

A growing mass should be regularly monitored especially if you notice that your symptoms are worsening, chase up.

Brokendeer profile image
Brokendeer

Hi firstly the others are correct, FND should never be an excuse for poor medical assessment and certainly not used as a `get out clause' to bump a patient off their service. Your GP sounds disinterested in your wellbeing too - find out if anyone local has a better GP?

Secondly, there are many things that can happen in the body, especially the brain that can be transitory; in other words events often occur and leave no medical test traces afterwards, but the body remembers the incident clearly and still continues to compensate to survive!

You mentioned not getting the full picture of your MRI results, I encourage you to be firm and request a written explanation from the Consultant or next visit take someone with you who you know is good at asking and understanding complicated information; who can explain to you in different easier terms later. I have done this many a time, sometimes just having a witness in a consult can chivvy up the medical professional to be ... well, more professional! And if you are not getting anywhere after that, get a second opinion!

Reading your initial symptoms and consequent issues, I would have 4 things definitely ruled out by a medical professional:

1) Blood Clot aka Embolism (Brain, Chest or Spine)

2) Hydrocephalus (water build up on the brain, which can be dealt with via a drainage shunt)

3) Hemiplegia (half brain like stroke attacks, similar to epilepsy but with longer aftermath symptoms and often triggered by a certain body posture/position)

4) Multiple Sclerosis (this can cause numbness in one limb, eye problems etc and has to be monitored by a Neurologist for up to 3 years to get true diagnosis as some versions are long term and some periodic).

Good luck

Look for the calm in the Storm!

210272 profile image
210272

Hmm, the making of the FND diagnosis can't be done in that time frame (according to DSM there aren't any tests for it and the drs need to take a full medical history) and should not be made because they needed the bed for someone else. That sounds like a 'wastebasket' dx to me. How was your health prior to the hospital visit where you got the dx?

In the first instance I'd contact Dawn at FND Hope UK (she is excellent and they are lucky to have someone willing to work for free) and address the email to the FND Society too. I'd simply ask them if it is acceptable that your diagnosis was made so quickly and that you were given no rationale for it other than your age. I wouldn't list all your symptoms - just the ones that are bothering you most should do - and I would say that you are willing to go private but that you are aware that other people in similar situations may not be able to afford to do that.

I would also recommend a self referral to a reputable balance centre where you won't automatically be seen through a psychiatric lens. The wait times were bad enough before Covid and are worse now but going private will save time, for sure.

CRPSplus profile image
CRPSplus

FND has been a dumping ground diagnosis for lazy health professionals for a long time, this is where its' 'malingering' reputation came from. There have been moves within government and the medical profession to put a stop to this, but bad habits die hard.

Have to agree strongly with Lady4's earlier research guidance about "Functional Overlay" as I actually have this.

So, your answers may not be in the right or wrong of an FND diagnosis. Perhaps assume diagnosis is right and seek what it might be masking?

Take care and keep pushing for answers.

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