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.

The brain is incredibly complex. I understand your worry about the stigma, but even if it is FND, it's still very real. FND is really misunderstood, IMO it's the symptoms that matter and how they are affecting you.

Anyone who stigmatises someone for having FND needs ignoring. It's them with the problem, not you. You have a diagnosis.

Try not to stress as that will make things worse. However you are now doesn't mean that's how you'll be forever so if you're struggling try not to panic.

I just can't believe this is happening. I feel so out of control of my own body.

I’m so sorry, that’s rubbish.

And frustrating. But don’t be too quick to worry. Try and concentrate on looking after yourself generally.

That sounds terrifying OP. I’m so sorry you’re dealing with this. Vent away.

Do you have someone to talk to in real life?

For what it’s worth, I’d never heard of FND or any stigma around it. I bet most people are the same. My first thought on hearing your symptoms is just sympathy for you, nothing else.

Thank you. Just can't believe I'm in my 30s and am scared to sleep incase I wet myself. It's embarrassing. I'm so fed up. I feel gross.

Please don’t think that health professionals think that you are making it up. It is a distressing disorder that is hugely affecting your life and therefore needs treatment.

Neurosymptoms is a very useful website that I often signpost to

Honestly I don't think i would tell a soul in real life. I have no idea what neurologist thinks.

This is a very upsetting phase of life but maybe having a Functional’ problem gives you a better chance of healing through relaxation and self care than if you had some disease or injury?

I think around diagnosis is one of the hardest times as you don't yet have a plan so can feel helpless and hopeless as well as scared of the future.

You haven't yet been told it is FND, but if it is, then it is what it is. It doesn't make you any less worthy of help or support or empathy. I think a lot of folk will understand, I don't see it as anything with a stigma, but remember you're in control of your medical info. You don't have to tell people (other than your medical team) it's FND if you don't want to. You can say it's a neurological problem or just nothing at all, it's no-ones business. You're in control of who knows and what and when.

I'd also say, that even with a different diagnosis I think you'd still be feeling some similar things eg let down by your body, frustrated, and not knowing why you. Let yourself feel whatever, sadness or anger, you weren't expecting to be ill and it'll take a while to come to terms with things. However, from my experience (not FND but a chronic condition with some overlaps with MS), getting a diagnosis but more importantly a plan to how to try and make things better or more bearable helps immensely. It can make you feel like you're back in control a little and give you hope. It might be a slow road and I can't promise there won't be setbacks but you have something to work towards and feel like you're moving forwards again.

I wish you well.

It almost feels like you intentionally wrote this to minimise how unwell I am. I've done nothing but self care the past few weeks, but my symptoms haven't just disappeared. It's been nearly 25 weeks. Half a year. I can't seem to just relax it away sadly.

I'm sorry that you're feeling low about your potential diagnosis. Just echoing others here to say that FND is still absolutely a "real" condition and if you were diagnosed with this it does not lessen anything that you are experiencing.

It's that awful phase of being glad your tests are clear, but pissed off you don't have something that has a clear plan of action. I appreciate this message though. Thank you.

Thank you. Having a look now.

I get that. I maybe once a week lose control of my bowels, it's so embaressing and you feel very childlike in a way as it's mostly children that you associated with wetting / soiling themselves. However, there will be lots and lots of adults who are incontinent. Our age (I'm early 40s), not just the very elderly. It's just not something that's talked about. I am sure that both of us will have met and interacted with people with incontinence but not been aware of it. I need to take my own advice, but please don't feel ashamed. Talk to yourself how you would a good friend who confided in you with the same issue. I'd give a friend a massive hug, I wouldn't judge them.

I don't think @SoNiceToComeHomeTo wrote that to upset you. Maybe she doesn't know anything / enough about FND and was trying to help. She does have a point as symptoms can improve if certain aspects of your life are eased, especially if the symptoms started after a stressful event, as they did with me. I have FND and SND.

Thank you. I'm sorry you're experiencing this.

I haven't spoken to my neurologist yet. Just seen the radiology report which says everything is normal. He said previously if all is OK then need to think about functional cause. Unlikely the radiologist will have missed anything so am bracing myself.

Sorry, just in a weird head space this weekend.

Yeah I had that before I was diagnosed. Tests would come back clear and the consultant would be excellent, xyz serious thing has been ruled out. Which was good, but at the same time it doesn't leave you feeling any closer to getting better / your life back.

Maybe have a think what you'd like to know / ask before your next neurology appointment? eg what's the treatment options etc

Hi OP so sorry this is happening to you. FND is so difficult. Do you live in North West at all? I've noticed an increase in diagnoses across the Greater Manchester area. Hopefully it means that people are becoming more aware of it. You just need to accept any help and support offered I'm so sorry 😞

Thanks. I'm in London.

I'm really hoping i have a follow up appointment rather than just being discharged.

It doesn't necessarily mean it's functional and if it is then it's still real.

My ds started to suffer spasticity and muscle spasms and his MRI of brain and spine were clear.

He was eventually diagnosed with hereditary spastic paraplegia which has a genetic cause which causes degeneration of the nerves in the spine.

There are many things between clear MRI and functional disorder.

I hope you get some answers soon.

No need to apologise. Your feelings are yours and need acknowledging. I didn't want you unnecessarily upset 💐

While FND is real it's usually a diagnosis once everything else has been ruled out and it's usually given prematurely to women when they assume they have anxiety and cant be arsed testing them for anything else, they usually cba with female patients in general. I wouldn't accept the diagnosis before other things are ruled out, I wad discharged from hospital with the consultant saying it was FND when it actually later turned out to be untreated coeliac disease which in about 20% of people presents neurologically.