Likely going to be told I have Functional Neurological Disorder

Thank you. The last thing I would want to do is minimise or dismiss anyone’s symptoms which are real, debilitating and distressing. I have ‘functional’ symptoms which don’t tick the boxes in terms of treatment and can be very hard to live with, so I do sympathise. And I have a little hope that things can change.

FND is such an awful name for a medical condition, as the 'Functional' part of it makes it sound less deserving, which it absolutely isn't (see also ME, CFS, Fibromyalgia) Functioning is anything but how you feel.

I just want to send you love and support. I have Ehlers-Danlos Syndrome and felt like I was going mad for years before my diagnosis (many, many years of being ridiculed and fobbed off, and eventually diagnosed 6 days before my 50th birthday mid pandemic)

I hope you get to the bottom of it, I hope you get some support and I hope others around you understand how much this affects your daily life. My experience is that most people will never fully understand your struggles unless they have been there themselves. Not to be negative at all, it is simply the reality of having a chronic health condition. Look for support groups online. They can be invaluable.

The best advice I can give you is Adapt and Adjust. I felt like kicking and screaming at first, but felt better once I accepted my struggles. (This is so hard when you're young) It could also be a temporary issue for you given the timeframe you've said your symptoms have presented. (I really hope so for your sake, I'm absolutely not minimising your symptoms here)

As others have said, you don't have this final diagnosis yet, but a second piece of advice I'd give is fight with all of your (limited) energy if you suspect anything else.

Sending gentle hugs to you.

Not in my experience and this also strays into minimising territory.

I'm sorry you're going through this it sounds miserable.
What's happening with your stress levels? What are you doing to bring them down? Can you bring them down?
I had dreadful issues brought about by a total clusterfuck of stressful stuff some pretty awful all happening one after the other. I have to say it took years to recover physically and mentally, well to get to a point where I was feeling like I was actually functioning anything like normally again.
I went and saw a functional medicine doctor (private not NHS) I found it worthwhile and he set me on a better path and 15 years on from where it all started now that my stressors are finished, dead or I can be ultra low contact with, the physical falling apart is a thing of the past and I manage daily life without sobbing meltdowns over the most minor things.
Sometimes time and removing the stress/learning to manage it better are the only things that fix it

I really get that. It’s not an easy or quick solution but the thought that it’s theoretically possible may give a little hope.

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.

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

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.

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 😞

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

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.

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'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.

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.

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?

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