Likely going to be told I have Functional Neurological Disorder

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 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.

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 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.

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 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

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.

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.

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.

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.

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.

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.

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 didn't say I did.

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.

@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.

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.

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.

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

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.