Cruel cruel diagnosis / NHS money saver.

[lovetherain]

I've just come out of Nottingham City hospital following admission due to loss of speech and right sided weakness. I suffer with terrible migraines, have done for a few years and during a migraine I loose my speech. The right sided weakness was a new thing and this is why they treated and scanned me for a stroke. Fortunately scans were clear as I was not having a stroke and my weakness resolved in 24 hours other than difficulty lifting my right leg due to knee pain. The moment the scans came back clear all nursing care stopped and the mood around me changed. A doctor (registrar) came in and mentioned functional disorder with a slight smile, gave me a link for a website and then left. I asked the consultant about this and he said "don't worry about that for now as I think this might be post-ictal syndrome". I also googled this which is the after effect of a seizure. They also told me that the physio would come later and if I'm safe to walk I can go home and follow up with my normal neurologist (for migraines). I was happy with this. The physio didn't come and the previously wonderful nursing care became minimal (not answering my bell, no checks, minimal conversation). The following morning a new consultant came in and said "your scans are clear you're going home". I explained that I was aware of this and was expecting to go home the day before, following the physio? He said that it isn't a knee ward (I had told one of the nurses about some knee pain) and he repeated "the scans are clear, you're going home".

The physio ended up coming, walked me quickly down the ward, said my leg is fine and its just my mind trying to protect my knee. Three hours later I received my discharge letter and left.

The discharge letter said;

Primary: "Functional Syndrome"

Secondary: "Possibility of Post-Ictal Syndrome".

I've been battling with how I feel about this all day. I can't help but feel that it is an easy cop-out and money saver for the NHS. If it is functional syndrome, whats the follow up? How do I stop it happening again? If it is Post-Ictal syndrome, whats the follow up? What do I do if it happens again? I have no meds, no advice, no referrals.

Finally why on earth didn't I get any migraine medicine?? I suffer with migraines, I believe this was a terrible migraine and I didn't receive any care for this whatsoever.

I feel totally screwed over. I feel nervous that if I have another migraine I'm not going to be believed. I also feel really upset that this "diagnosis" is now on my record.

It was them that decided to run investigations and treatment for stroke. I even delayed the thrombolysis treatment until the last few minutes of the treatment window and expressed my concern that this may be a migraine. I appreciate the precaution but it feels very cruel to have been diagnosed with a psychosomatic syndrome just because I hadn't had the stroke that they treated me for.

My mind has been spinning all day - I don't know whether to take it further or just ride the storm while trying to disprove their diagnosis which leads me to how this could be done... it can't! I suffer with migraines, migraines cant be tested. What a cruel, cruel diagnosis this is.

[djbjp]

Functional does not mean psychosomatic. It actually is a common thing, but regardless of your diagnosis the nurses treating you differently is appalling, but all too common too. There is a lot of support groups on FND on Facebook if you are interested.

[Impishcat]

It's not a money saver. For a lot of people functional disorders are short-lived. For others they are life-long and the healthcare system is still a long way from working out an appropriate treatment and management plan. However the change in behaviour from the staff was not okay.

[M3rry in reply to Impishcat]

Hi and hugs.

Do not think you have a psychosomatic disease - these are really very rare. What you have is (reputedly as I can't find actual numbers) more common than MS. It is real and researchers have found real, measurable changes in the brain when they perform an fMRI (do not expect to see one used as a diagnostic tool as these are not only expensive but need the kind of expert who is doing research to fully understand). You have something real.

That they turned off treatment - you are so lucky that you got kicked out by a consultant not the bed blocking team (one of them tried kicking out my MiL - she was in final stages of brain cancer at the time). You could try a complain through PALS they should at least get you a half-hearted apology.

Now the bad news - I am in Newark (the original on the Trent not the copy on the Hudson) so I can tell you the 'local' treatment. THERE IS NOTHING. I tried searching out a NICE guideline - nothing. There are some patient-led self help/support groups in the county (too far for me) but most of them appear to be working towards helping those with seizures (these are not epilepsy so don't freak about brain damage - not for us) ask those here about their seizures - I personally do not know if they get a 'post-ictal' state as a quick look links this to epilepsy. Some GPs might look at the neurosyptoms.org website and start muttering about CBT - that is available if you want to push for that and (hooray for Notts) you can self-refer! If you push for physio - my local team had heard of FND and they might be able to help with your knee (I'm getting neck physio in case the cervical stenosis is adding to my FND symptoms).

What you can do: Learn to live with this (it will take time I'm still reeling from my diagnosis in Dec - that consultant gave me the diagnosis and neurosymptoms.org and kicked me out and off book, my GP is still confused by that). Learn some relaxation techniques, this gets worse with stress. Do not worry if things get worse, learn to read your own body and predict when to expect a 'bad day'. Learn your own pattern of symptoms, everyone of us is different.

Don't worry about the 'this is linked to trauma'. While too many of us might have had abuse or a really bad accident many haven't. Don't worry about that, it is that link that makes quacks think it's all in your head. Just reading through this site and comparing that to the news and the reason appears (to me) is that abuse is under reported - the link is there because we are so desperate to find our 'cause' that FND sufferers admit to things 'normal' people don't admit to. If there was a real link it would show up after wars or terrorist attacks (or in those towns with child grooming headlines).

Welcome to the forum though!

[DNE92]

Sorry about your treatment and even sorrier that I wasn't surprised. Psychosomatic is a term that went out decades ago and rightly so. We are not imagining these things and we actually have better things to do with our lives than lye being ignored in a hospital bed! We have functional seizures because of this non degenerative brain disorder which has symptoms akin to and is as distressing as MS and Parkinson's. I wear a medical rag at all times that I designed and then honed with hospital and paramedic input. I have never heard post ichtal as a separate syndrome but rather the phase we automatically enter after a seizure - I am paralysed, mute, sweaty - generally still not myself. I think medics find us that suffer from seizures as a poison chalice as there is no medicatuon they can prescribe us and they have no aetieology so finding a cure is problematic. And so we just get told to go. I've had to be taught to walk again twice but as soon as the physio has me shuffling it is - there is the door. Keep strong, keep complaining when you don't get what you deserve- especially medical views belonging to Hippocrates 🤬.

Cheers

Lou

[lovetherain in reply to DNE92]

Thanks for your kind response Lou. Sorry that you have also had to experience this x

[Chingona]

Unfortunately I think this might be a pretty typical experience, I’ve had hospital staff accuse me of being on drugs or diet pills and told to eat more and get some rest and If be fine. It’s frustrating! There are migraines that mimic strokes, and I’m wondering why they didn’t follow up with that?!

[lovetherain in reply to Chingona]

I agree and will discuss the migraines with my normal neurologist on 31st but thank you for taking the time to respond and for your kind reassurance that maybe I'm not completely losing my mind x

[lovetherain]

I will reply properly at some point but this post is just what I needed as I've been totally drowning in a pool of self doubt and feeling like maybe I'm loosing my mind. It was so so kind of you to take your time to write all of this and greatly appreciated. Lots of love xxxx

[Hidden in reply to lovetherain]

It’s disgraceful yes and I too experienced this smile/ smirk when I had a left sided stroke like episode. The neurologist described it to me as a response to trauma following sepsis. He made the analogy of a very good fuse box shutting off with a power surge. When I told my GP she laughed and said “ah is that how he explained it then..hmmm?!”.

Later, after relocating, I discovered from a rheumatologist (I have an autoimmune disease called Sjögren’s) that he had described it as a “functional left side hemiparesis”. Each doctor I saw after that smirked a little when they read it. Then one day I took a Tramadol for neuropathic pain and learnt that my left side paralysis had been Tramadol induced rather then functional.

But now, 4 years later, symptoms that appear to fit with FND, as most symptoms can and do, have resurfaced and again the F word has returned on my notes,

My feeling is that you are right - diagnosing functional disorders is suspiciously common now while complex or expensive tests for disorders such as MCAS and rare rheumatic diseases are increasingly hard to access. To me this is more than coincidence. Has everyone diagnosed with FND had their serum tryptase, ENA antibody panel and HLA-B27 antigen tested for example? Given the serum B12 test is acknowledged as being very unreliable - even a diagnosis of FND by exclusion doesn’t actually ring true to me.

We human beings are so complex and everything is organic - whether psychological or physiological. It is not really possible for any doctors to unravel the tangle and decide what belongs where. And even if there is a thing called FND - healthcare just isn’t set up for it yet.

Why can’t the medical profession at large have the humility to concede that they just don’t yet know what’s wrong with us? A lovely GP once told me that neurologists are a strangely arrogant breed and call anything and everything they don’t understand, functional.

So to me it seems that diagnosing symptoms as functional is just a way of putting the breaks on further investigations and saving the NHS money.

I know many here feel differently about it but for me, personally, it’s a diagnosis that seems to throw my inner compass into orbit, making me doubt my always very good instincts and causing me much distress. From experience I choose to trust my own instincts about my multiple (systemic) symptoms and if necessary look for better doctors. I don’t think anything is functional for me but the stress of feeling disbelieved can cause anxiety which worsens so-called functional symptoms.

Even my severe migraine like headaches were actually coming from slipped discs in my neck so my neurologist and rheumatologist confirmed. Yet still my neurologist keeps trying to diagnose me with functional overlay and my otherwise lovely neuro physio tells me how wonderful it is that so much money has gone into our otherwise bankrupt local teaching hospital for research into functional disorders and CBT for sufferers.

Meanwhile my confirmed rare rheumatic disease is considered untreatable and I’m left to try and manage it all on my own. If only all this research funding was going into rare rheumatic diseases like mine and mast cell activation disorders or finding a cure for MND instead of into researching FND/ conversion disorders.

Perhaps you could contact the Migraine Trust for advice and support on this?

[artmom]

You have support and understanding here. Disgraceful treatment. I echo what others have said. It can really shake ones ‘self’, which I think may well be the un/intentioned effect of the doctors projection of their fallibility and uncertainty. They often being far too un-self-aware and arrogant to countenance ‘I don’t know’; must be you!

Sending you positive thoughts and belief xxx

[AjaStar]

At or time, Emergency room doctors said I had a possible migraine aura, research it online and see if it fits you.

[Brear29]

I had to fight with a to get headache attacks mediction and I got mine it's a blood thinner (Zolmitriptan) ask ru doctor for that?