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.

Thanks. I think it's more because I had the weird nerve feelings, then had a panic attack, which made it worse and otger symptoms started, so feel like it's all in my head. I have hidden it from work and just ploughed through because I don't want my manager to know I potentially have fnd. Makes it so much worse that he has MS and I just couldn't bring myself to be honest as hes only recently been diagnosed, and was very upset. I took two days off with fake d&v instead, and then as I work from home, I battle through the worst of it. I just feel very confused and out of sorts.

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.

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

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

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.

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.

Your symptoms are exactly the same as my Long Covid experience. Plus a few other things thrown in too.
I struggled for 3 years and then things started to get better miraculously. I'm not 100% well and maybe I never will be but it's very copeable now and the worst symptoms have gone.
I wish you good health.

I'm now only stressed by my symptoms. The stress that i was struggling with that triggered a worsening of symptoms was my hyperactive DS and also was suffering with chest pain and leg weakness so convinced myself I had the same brain tumour my dad had. But my symptoms were there before I felt stressed, just exascerbated by it

They also worsen when I focus on them so I know deep down it is probably fnd.

Do you believe that women have an easy time engaging with the health service?

I do have this horrid feeling in the back of my mind 'what if it's something else they haven't looked for' but realistically how far do you take it?

There is literally no one who will advocate for yourself. As I said, I was discharged from hospital with 'FND' bur it turned out to be coeliac disease. The one where you should eat gluten or your nerves and brain literally dissolve. The worst part is they gave me a sandwich before they sent me home, absolute joke. Don't know why I pay taxes to be honest.

I had this and found it helped when was explained as “a problem in the software rather than the hardware”

it did mean it became easier to not worry about about symptoms as originally it was thought I may have MS which was very worrying.

i found a course of prefab a-line stopped the nerve pain and after a year I was weaned off and now, years later, only get fleeting random symptoms which I can cope with.

Hope you find a treatment plan that works for you soon.

@Tilly915 FND is a real neurological diagnosis and there should be no stigma attached to it. FND Hope is a great website if that's your doagnosis.Essentially it is the brain's way of trying to cope often after stresses, recent or in the past. It tried so hard, that something tips it over and genuine physical symptoms appear - might be described as a problem with the software, nerves and communication, rather than the actual hardware ie the brain. If that is the diagnosis that to be fair that is probably better than say a brain tumour or MS which the tests and scans will have ruled out. Ask the neurologist for a referral to the neurological rehabilitation service in your area and The Occupational and Physiotherapists will be able to help you. Also ask for input from a psychologist.

OP if you do receive FND as a diagnosis please really push for a referral to a specialist service- these tend to be regional. FND is treatable and it needs an MDT approach for best outcomes.

I didn't say I did.

I have a diagnosis of FND.

In my case it was following a physical accident where my foot was badly mangled. I had multiple surgeries and needed physio to relearn to walk.

I have also been told that the problem isn't the hardware it's the software (which does not make sense to me as my hardware was pretty badly damaged).

As far as I can tell if it isn't MS or one of the other ones they can easily diagnose it's just the label they use.

My daughter in law had a brain tumor which has also got her a FND diagnosis which again, seems a little strange as there is an obvious hardware issue.

I don’t think generalizing like this is helpful.
i work in healthcare and dont discriminate on the basis of a persons sex. I also have a really rare illness (2 in a million) which my GP identified immediately and swiftly sent me for diagnostic tests. No discrimination or minimizing there either.
FND is a very real and disabling disorder and no competence neurologist would diagnose it without doing everything reasonable to exclude structural pathology first.

The software / hardware comments is because in the brain there is nothing to see on a MRI or CT, if you had a tumour there would be something to see.

Just to mention OP I had all those symptoms along with a strange kind of heady spaceiness , weirdly sore eyes and weird buzzing in one finger( like I had a battery in it) - mine came on out the blue about a week post having covid and then escalated badly after my 4th vaccine.

It gradually decreased and decreased after I took loads of vitamins every day , including extra VitD and vit B12, drank an absolute ton of water every day and did stretching and breathing exercises - took about 7 months to really calm down and I get odd bits of it now but nothing like it was . I saw a neurologist too who did lots of specific tests and said she had seen a fair few similar cases post COVID- and felt it was a really acute viral ( or vaccine) reaction that had buggered my nervous system and that it would slowly improve - and it does seem that way

I'm wondering if yours may be something similar.

FND is very real and there should be no stigma, some people just don't get it. I'm a nurse who's worked with a lot of people with this diagnosis. I doubt you'll be diagnosed at this point, there's probably more tests to do.

For what it's worth, anxiety, panic attacks and focusing on/thinking about what's happening can make symptoms worse for everyone, caused by software or hardware. A panic attack has a systemic effect on our bodies, and takes time to normalise after, so don't overthink that aspect.

My daughter was diagnosed with FND at age 13. It started after a significant injury, Resulting in a disc prolapse which caused sciatica type pain in her leg. She ended up using a wheelchair due to a contracted very stiff leg and self catheteriised as she then went into retention.

She had normal nerve conduction tests so although she had significant MRI change showing the disc prolapse was pushing into her cord, she was diagnosed as FND with psychosomatic overlay. She was very negatively labeled. It was a terrible time for us all.

After a hospital stay, which did not help, we eventually took her home where she had intensive physio, mainly hydrotherapy. We stimulated her foot/leg with different sensations and massage. We worked on her self esteem. It took 18 months for her to make a full recovery. All her symptoms slowly resolved in the reverse way they had occurred in.

She is now 25 and has never relapsed. She is fully recovered and has a normal active life . I am not convinced that FND was the right diagnosis but I do feel her brain could not cope with the neuropathic pain so it was like her brain switched off her leg/bladder.

The two people I know with an FND diagnosis both have obvious hardware problems.

One has a brain tumor, the other (me) has mangled peripheral nerves from an accident.

It is possible that doctors are not supposed to diagnose FND if there is a hardware problem in which case there's at least two out there doing it.

Op, a number of people who are given the FND diagnosis eventually discover what it actually is. FND pretty much means unexplained from a medical point of view. Some develop serious issues like brain tumours or detectable MS, for others it is likely neurological after effects of something like Covid.

Getting this diagnosis doesn't mean it's all
In your head. It does usually mean the doctors in this speciality can't find anything wrong at the moment.

Often it either resolves (like most covid neurological after effects) or gets worse and something else is diagnosed.

Think of it as a pending diagnosis if that helps.

I agree @Jaffaisitacakeorbiscuit . I had such a trauma that I had periods afterwards where I just stopped talking. I would be speaking and mid way through the sentence the words would just stop coming. At first it was just for hours then it became days. Now I struggle to find the right words at times, have developed a stutter? (Saying same one or two words over and over until the next one comes) and sometimes I know it's the wrong one and it takes time to get the right one.

Edited for typo

Thank you. I find it really hard to advocate for myself. For someone who has/had nerve pain, tremors, pins and needles, wetting oneself at night, leg stopping walking so I couldn't walk home, tinnitus, number patch on back, and muscle pain in thigh, nystagmus for 3 days, and possible hyperreflexia are there other tests I should ask for? So far I've had mri, and nerve conduction. Sorry if this is an inappropriate ask.