Likely going to be told I have Functional Neurological Disorder

[Tilly915]

Sorry for posting this in 2 different places. I just really need support, from somewhere, as I feel like I'm going mad and can't stop sobbing. My stoicism seems to have abandoned me.

I've had weird symptoms for weeks now. Limb weakness, leg not functioning, eye flickering, wet myself in sleep, limb shaking, tinnitus, pins and needles, pain. All on rhs. Had MRI of brain and spine which ruled out anything structural, which I'm glad about. Haven't had follow up with neuro yet but I'm fairly certain he will say it's functional. It came on when I was very, very stressed. I guess I'm just pissed off that this is happening. I feel like my body is falling apart and I've no idea why. I'm so glad my MRI is clear, but equally I don't want to be given a diagnosis of something that's so stigmatised and just want my symptoms to go away. I feel so low, and just need to vent. Feeling really, really hopeless.

Hi
Ive been where you are and can understand the total shock at the possible diagnoses.
I was diagnosed last year due to uncontrollable spasms in my body.
they think my chronic migraines which causes prolonged stress led to my FND symptoms.
There is hope ! I’m better than I was and hypnotherapy has really helped me lessen my symptoms . Please PM me for my therapists details .
It nearly broke me on the way , it’s taken 18 months to get past the worst but I’m getting there . There’s a part of your brain that’s doing this , you aren’t the problem it’s an unconscious thing . But our brains can be retrained , they’re flexible that means fixable .

I think you are jumping ahead of yourself. Let the neurologist do a full assessment - the imaging informs this but there are neurological conditions that aren't visible by scan but by response to physical testing.

I notice you seem pretty sure that it has been caused by stress and I hope that is the case, because resolving the stress would likely relieve the symptoms, but you have to be patient and rule out other causes.

I'm jumping so far ahead, yes. I've convinced myself it's stress related, maybe because I suspect this is what I'll be told so it's just softening the blow.

So sorry you’re going through this. Hope I can put your mind to rest a little. Plenty of us with neurological symptoms and nothing significant on the MRIs etc so haven’t resulted in a specific neurological diagnosis but have found medics who understand / have experience of cases like ours and are able to treat or at least accept we need to pursue other testing, look at lifestyle triggers etc. The two (NHS & private) neurologists I’ve seen for years never mentioned FND (fine if they did but they were persistent in looking beyond) and did not gaslight nor minimise me when it transpired I don’t have MS or similar and they readily accepted the hypothesis that my own neurological issues appear to have resulted from a stomach bug and / or, more recent discovery, exposure to mycotoxins released by mould (common in many UK buildings). I have also had inflammatory issues in my spine and the (again, NHS & private) orthopaedic consultant accepts the same hypothesis. They’re a lot more evolved these days, I promise. Get a second opinion if yours isn’t. I’m in a group of people who’ve been seen by a functional medicine consultant who deals with cases which other medics haven’t yet been able to help with (again, I stress that my main NHS / private consultants accept my very real symptoms and don’t put it down to stress or similar). The Functional medicine consultant works as an NHS consultant most of the week (which helps answer back any unhelpful questions re if you’re seeing a quack!) then does the private consulting part-time to help patients like us where the standard NHS testing isn’t sufficient (yet) to diagnose. Two neighbours - again, patients of a well-known UK NHS neurologist - lived at different times in the same house and developed neurological symptoms and were diagnosed with MS. NHS neuro said years ago that trigger may have been mould exposure. Can’t speak for your case as we’re all individual but there are various things eg such environmental triggers, Covid etc which can affect the nervous system and do not show up on current imaging / neuro tests but are accepted as being very real and just not fully understood yet by ‘conventional’ medicine, Best thing I did was find a NHS / private neuroinflmmation consultant who validated what was going on with me (I’m one of several patients who were believed to be triggered by the same bug) and now mould is understood to be a big factor for me (I tested positive for high levels) he’s validated that too. The functional consultant was then an amazing find as he’s signposted me and others to ways to tackle our respective conditions / symptoms. Sorry this is so rambling! Typing is tricky for me. Wishing you well and wanted to say do not give up hope. The body is a brilliant thing but my God does it throw us curve balls sometimes!

I can't comment on further tests but I can advise on treatment.

I wasn't able to access any NHS treatment after my accident so I had to put together my own programme.

Firstly, hopefully you are on drugs for the nerve pain. The usual course of action is amytriptyline first, which if you take it in the evening can also help you sleep through the pain. If amytriptyline doesn't work or isn't suitable for you alternatives are duloxetine (has the advantage that it is anti anxiety) or gabapentin.

I haven't had tremors myself but I understand there are drugs that help control them. Beta blockers are what my daughter in law uses (she's the one with the brain tumor and the FND diagnosis).

With sensation, you can develop a programme to normalise it. The weird sensations are your nerves doing weird things. You can get (for example) several different textures - eg I used a coke can, sheepskin, and plastic, and just hold them against your skin and focus on the sensation, You are essentially trying to retrain your nerves.

Depending on what the problem is, your nerves may not be retrainable. I have some parts of my foot that just don't have sensation. But I recovered quite a lot.

Hi OP, so sorry you’re having such a difficult time. I have a family member with this and honestly? No one has heard of it. She refers to it as a neurological condition and we talk about it in terms of, your body works fine but your brain isn’t sending the message correctly hence it’s just not playing ball. As far as I’m aware no one has judged her/us on it; helps that she was a busy girl who did everything, so very obvious that this isn’t something she has wished for.

The symptoms are real. It really doesn’t matter what’s causing it - not your fault, not your choice. Please don’t feel embarrassed - this isn’t your fault. It’s an awful condition and you would probably benefit from love and support from those around you. If you get a diagnosis please don’t hide it. You need support. And anyone who judges you really isn’t worth it. And is ill informed. I had a brain injury and recovered. The fact that it could be ‘seen’ and was relatively common, with known prognosis, helped so much at the time, and really brought me through some terrifying symptoms. From that perspective FND is worse. So please don’t be hard on yourself. Know that this is an awful time, you are truly and genuinely ill, that help is out there and most importantly, it is temporary. Which means that things will get better for you.

I think it's just easier to deny it and carry on than to try and explain it. But thank you. I will find my own way of supporting myself I'm sure.

That actually sounds like B12 deficiency.

My b12 is normal

@Octavia64 re the software hardware issue, as I understand sometimes the software doesn’t accept the hardware has been fixed.

I have fibro which has similar issues. After any injury, I took ages to recover if at all. My brain was trapped in a trauma response, over reactive, over defensive, and convinced I needed to stay still and stop doing all the damaging things.

A physio taught me how to move the various areas incrementally, stopping before anything hurt, building up the movement, until my brain accepted that it was a safe movement. When I’m tired and stressed my brain throws up an error code out of a selection it’s had good practice with, and sirens go off about the pain in my left foot/right rib/small of my back etc. There’s no damage there anymore. Just the memory of pain that my brain uses to tell me to slow down and look after myself better.

At least, that’s how I understand it.

Hello OP.

I am so sorry to hear you are going through this. I went through something very similar this year.

It started with tingling, then my skin felt like it was burning, then numb patches on my legs, twitches. When I lost control of my bladder I was rushed to hospital. They took it very seriously and suspected MS at first, but my MRI's and nerve conduction tests were normal. They kept me in for 4 days and ran all sorts of tests - nothing was found, just slightly raised liver enzymes which could have been something simple.

I was discharged and paid for a private neurologist, who also couldn't find anything wrong with me. My symptoms have improved somewhat but are still there.

I KNOW there must be something going on. It all started 3 months post partum - maybe it was triggered? But I still have no answers and a doctor also mentioned functional neurological disorder.

I'm going to see an endocrinologist next as I'm ruling out all options before I accept that diagnosis. Feel free to message me.

@myplace

Thank you that's an interesting way to think about it.

I'm learning more from this thread than anywhere else!

(My hardware is as fixed as it can be, but nobody looking at my foot would say it was normal!)

My mum just sent this link to me, hi mum 😘 I too have FND. Sudden onset Jan 2021, no neurologist despitr urgent referral til Jan 2023, "it's vestibular migraines". Ye fucking what, 24/7 for two years, aye OK.

Spire healthcare £300, diagnosis within 45 mins.

One of my biggest issues is functional gait disorder, saw a fucking useless nhs physio in 2023 who was OBSESSED with my hypermobile knees, that I'd never noticed or caused issues, he called the day after diagnosis "oh I wouldn't say you have fnd, normally they pretend they can't do tasks we've seen them do before". Absolute CUNT.

My gp fortunately re-referred me for physio and I got a proper old persons let's get ya fit to go home physio, she knew everything about fnd and really challenged me, pointing out my strengths and weaknesses, identified totally where I've put in place certain movements or placements of my body to just feel safe.

I was knocked back for cbt, the recommended therapy as I'm mentally too well. Thank fuck I am cause I'd be dead by now otherwise.

Best of luck pal

P.S my gp said to me upon diagnosis that they used to think epilepsy was nental instabilty/folk faking too.

My daughter has a diagnosis of FND, it was last year that she saw the neurologist. Unfortunately we’re not in their catchment area for treatment so I have been searching desperately for help. I have M.S and the way it affects her is very similar, I paid for her to see one of my neurologists to rule out M.S or confirm she has it.

She has had gynaecology problems since she was 14, at the age of 21 and sick of getting nowhere we paid for her to have a laparoscopy, which discovered stage 4 endometriosis and other gynae complications, it’s been awful. She has had so much negativity over the years especially in the work place and school in particular with time off due to horrific period problems. Anyways swipe to now and we are paying for a psychiatrist, she has been diagnosed with Complex PTSD due to her trauma with gynae, one consultant in particular playing God.

Her psychiatrist has recommended EMDR, this has been difficult to find within the NHS, but I’ve managed it, and we are currently paying for her to see a psychotherapist which is comforting for her. She also has a brain tumour, the same as Davina McCall, currently being monitored but nearly the same size as Davinas, so an operation is imminent (found on MRI when looking for any M.S lesions). Her neuro surgeon diagnosed FND, and told her not to listen to people that say it’s all in your head, it isn’t it’s very fucking real!!

The way it’s been explained to us is that it’s a software issue, your body simply can’t cope with any more, it’s literally put the brakes on and stopped her in her tracks at the age of 29. She has been in fight or flight mode for many years and the body can only take so much, it’s now thrown it’s teddy out of the pram.

With you being in London it’s highly likely that there are hospitals close by that have a multi faceted team specialising in FND. I listened to Prof Stone on a Jeremy Vine show last year, look him up there’s all sorts of information on his site. Also EMDR is a really good, look up the information on this link, it’s brilliant

https://drarielleschwartz.com/emdr-therapy-for-complex-ptsd-dr-arielle-schwartz/

I really do hope you get the treatment you deserve, FND is a bizarre condition and it just shows how connected the body and mind are. Take care, I genuinely hope that you get the help that everyone with this rotten condition deserves 🤗

Oh yeah.

You can read research articles from the 1960s saying that MS wasn't a real disease and all the people who had it were pretending to be sick for the attention.

Be careful of diagnosing yourself pre emptively. I did that with FND, and didn't seek help. It turned out to be something completely different, that would have been cureable if caught earlier.

Such as?

My gp was very clear with me that I'd face a lot of hurdles but his memo about how in the past seeing epileptic seizures as being faked before they understood what they were really resonated with me.

I don't have to justify myself to anyone thankfully, the people closest to me know.

Also, ironically, the condition I did turn out to have was thought to be psychological before the advent of nerve conduction tests.

Thankfully I've had some nerve conduction tests, and they were normal! We'll just have to wait and see. Hopefully it won't take too long for the neurologist to read the report and agree with it/write to me.

Wow, so first of all, I’m sorry you’re dealing with all of this. I completely understand the frustration of wanting answers but feeling terrified of what those answers might be. The waiting game, not knowing what’s going on but feeling like something’s off, is so draining. I really get what you mean about your body feeling like it’s falling apart and not knowing why. It’s like your own body is betraying you, and there’s nothing you can do to stop it. That’s an incredibly overwhelming place to be.

Honestly, it’s a relief that your MRI came back clear because I know how terrifying it can be to think something major might be wrong structurally. But at the same time, not having that definitive answer just leaves you in limbo, which is tough. I can’t even imagine how frustrating it must be to think your symptoms might be labeled as “functional” just because they started when you were stressed. It’s like, you’re already dealing with all these symptoms, and then you have to contend with that added layer of doubt, asking yourself, “Am I crazy?” It’s so much to carry.

I totally get where you’re coming from though. I was diagnosed with MS three years ago, and while it’s a diagnosis nobody wants, it was kind of a relief to finally have an explanation after years of random, weird symptoms that no one could figure out. Even so, it was a rollercoaster of emotions. I had my first major relapse (which I tried to ignore and wrote off as stress) and got over it in about three months. But then, about six months later, I became permanently legally blind in left eye, which was not supposed to happen—because apparently most people with optic neuritis get most of their vision back. But, well, I guess I’m just super unlucky.

And now, on top of all that, I’m going through withdrawal from high-dose IV steroids as my most ecent MRI showed a few new lesions so right now I’m in this weird place where I just want to pass out from exhaustion and punch someone in frustration but even with everything going on, I try to remind myself that life goes on. Some days are harder than others, but feeling low or hopeless in the moment doesn’t mean it’ll always be like this.

I don’t have much advice OP but I really feel for you and I hope you can get both answers and some effective help very soon. I think genetic testing is worth asking about again, if you have not already had it, but I really just wanted to share that a neurologist told me how symptoms can be complicated by a secondary Adrenalin rush. So you experience a symptom and due to the stress it causes you an Adrenalin rush occurs with all its own symptoms. So just because your symptoms worsen when stressed doesn’t necessarily mean they are caused by stress in the first place, it may just be that it is amplifying them if you know what I mean. So sorry you are suffering.

I was getting neurological symptoms from msg and was eating it daily without realising. My symptoms were sudden muscle weakness, pins and needles, numbness, was terrifying.

Have a look out for things like that, something innocuous can cause neurological problems. It could also be a b12 deficiency. Speak to doctor and try to relax 💖

Also, learn how sugar free drinks that contain sweeteners effect the brain, remove that from your diet if you’re eating or drinking it