FND: at a loss as to how to support a friend

[333FionaG]

We’ve been close friends for over a decade and during that time, she’s had numerous episodes of ill health including non-epileptic seizures, ongoing tics and vaso vagal attacks. She’s had lots of investigations done and her neurologist has given her the above diagnosis. I can find very little about this disorder online, and I would really appreciate advice from someone living with the condition and how best to be a supportive friend. She’s recently told me she feels as if having an FND diagnosis means nothing she experiences is taken seriously.

I don’t have FND but a good friend of mine has recently been diagnosed after years of symptoms no one could explain. Sounds v similar to your friend although kind now uses a wheelchair permanently and has carers for personal care. Most recently she has had a PEG fitted for tube feeding. Sounds like she might be a bit further along than your friend?

It’s horrible to see the decline - from active and sporty with a high powered job to the almost complete opposite. As much as possible we try to keep things “business as usual” because she’s still her wonderful self. She has said she finds new people see only her physical disability and don’t get to know her personality.

My friend is still mobile but her joint pain is affecting how much walking she can do. It sounds like a misunderstood condition. Hopefully more research will lead to improved treatment.

This website for patients has lots of good information about the condition. It is written by one of the UK's experts on FND https://neurosymptoms.org/en/ (and is also recommended by NHS sources).

The original diagnosis was MS then possibly Epilepsy then another thing with a complicated name… it has taken a very long time to get answers. But my friend has found there are some medics with good knowledge of MND and how to manage it. Her pain is well controlled now as are the seizures.

Forgive me - FND or MND?

As someone who treats this condition I'd say the most valuable thing you can do is believe her symptoms and experiences and never doubt the reality of her situation. The rest is just being the supportive friend you would have otherwise been even if she didn't have the condition.

Based on the OP it's the former.

FND Hope was helpful to my relative whose daughter has suffered from this.

It can be a controversial (dustbin) diagnosis and there is a paucity of research.

Functional Neurological Disorder

It's not/shouldn't be that it's not taken seriously by medical professionals, just that's not a medical emergency. Seizure/collapse episodes can typically be caused/be life threatening emergencies and necessitate a response as such. So initially the episodes get a lot of attention/tests to understand the cause.

Once the cause is identified as an FND the episodes don't warrant that emergency response and can actually become harmful/worsen episode duration and frequency. Regular contact with a consistent Dr/team who knows the patient and can assist in a strategy to treat/reduce the symptoms tends to be best.

I have FND.

as others have said it is something of a dustbin diagnosis.

they use it if you have obvious neurological symptoms which affect your functioning but you do not have any of the named neurological disorders.

in my case I have significant physical damage following an accident which is an obvious physical cause.

the diagnosis itself is not much use. Of more use if learning how and when you are likely to have symptoms (ie triggers) and avoiding them.

Sorry, I know what FND is, I meant to quote @PoliteSquid

@ByLimeAnt you’re right - I put MND when I meant FND. And now I think I can’t edit.

anyway, this isn’t my thread but thank you for posting those website recommendations @Locutus2000 and @parakeet

I also recommend FND Hope (My DD has FND) - There also good books available on Amazon.

I'm happy to debate this reasonably with anyone.....

FND, is in my opinion, incredibly damaging and even dangerous a diagnosis to be given. From all I have read and witnessed, it is a waste basket diagnosis that encapsulates too much to be of merit. There's a word salad type plethora of, well, word salad, on the website FND Hope. No hope for me there on reading I'm afraid.

Why are the FND departments all within psychology wings of each location across the country? That makes me uncomfortable.

I've watched a video from one of the guys who birthed the term. That disturbed me. Very much a word salad re branding of hysteria.

In this climate, we have a problem wherein women especially are dismissed and ignored. We have a problem with resources. We have various weird and wonderful physiological differences that so very many neurologists don't understand. I have encountered so many old, male neurologists. If it wasn't MS, MND or something well known as well I think I'd trust Google more than what I've experienced from neurologists.

I eventually did get answers. The real answers.

I have Ehlers Danlos Syndrome. I have associated problems with this which are systemic. It can impact joints, gastro motility problems can occur, it can cause all sorts of problems and co morbids that are terribly ignored and misunderstood. This condition is a genetic defect in collagen. Your collagen is everywhere. There is no reliable genetic test at this time but there's research. I'm diagnosed, not after being gaslit into oblivion first.

I have POTS - a co morbid. The Autonomic nervous system is messed up and doesn't function as well as someone without EDS. The symptoms can be horrific. I take lots of meds for this. Again - gaslit to high heaven. Until I found someone versed in it and had the testing. I also had skin biopsies explain why the full body screaming burning pain I experience was happening. Small nerve fibres actually being obliterated ( small fibre neuropathy). I have an autoimmune condition too which causes this. Gaslit again. Told by many I didn't have it before I was eventually diagnosed.

A biopsy of my lip gland showed immune cells had infiltrated and was destroying that. Lovely. This confirmed the autoimmune disease known to obliterate small fibre nerves. Not one neurologist I saw mentioned this before hand and suggested it was psychological. Again, I had to go private to access the lip biopsy and skin biopsy and the Autonomic testing showing y messed up autonomic nervous system and POTS symptoms.

Because I am very determined and my suffering was so severe, I could not walk away without learning everything myself and getting the answers.

Yes I'm still in a mess but by god i would be raging being told FND, knowing instinctively that's bullshit and there's a more defined explanation that is not word salad ' function, interpretation, enotion' rubbish.

I do understand that this term has been re branded somewhat and I absolutely believe people can have more sensitive systems than others that are triggered and they don't find a physiological cause.

The NHS found no physiological cause for all my complaints and I have a multitude of defined conditions now apparent. They simply didn't look there. Because it was out of the remit on their computer systems and computer said no whenever I asked them about any of this being a possibility.

My advice is to ask your friend if she's heard of EDS and POTS and go from there.

@JoyDivision79 I'm sorry you had to go though that and I completely agree with you about FND. I'm really glad you were able to get a proper diagnosis in the end. Recently a friends 11 year old daughter has been diagnosed with FND, they didn't even bother to give her any scans or tests, just sent them off with a leaflet with physio exercises on it. When my friend protested the doctor told her that the diagnostic criteria has been changed so they no longer have to do any tests to rule out other conditions before they diagnose FND. Apparently he could tell that her daughter had it just by the way she walked. 🙄 She's trying to get the money together to take her privately for a second opinion so hopefully they will get some real answers. I think the more overstretched the NHS becomes the more and more we are going to see of this so called FND, I suspect it's saving the NHS a lot of money.

Ah this is appalling. I have seen such absolutely disgraceful behavior by many medical professionals. I have a few really good ones. One consultant has been a great advocate for me against the nonsense so many try put on you.

This FND is imo, often, medical gaslighting at it's finest. I don't believe in all cases, yet, in many, it will be.

I always think Ehlers Danlos Syndrome ( hyper mobility type) is worth looking up when anyone has problematic symptoms that seem unexplained. It's so difficult to get this acknowledged. I understand training for medical professionals on this is incredibly basic. I know significantly more than most doctors I've encountered, with the exception of the few experts. Because it isn't really well covered in training. We don't have a gene identified yet either. No blood tests. But - the impact of living with this can be absolutely crazy making.

I paid for the leading expert to see me. He pointed out my spine totally bends to the side as I touch the floor with my hands ( easily). He pointed out so many massive things. I thought, how on earth could you all miss this?

Problems with the autonomic system are also behind many odd symptoms and most neurologists don't even mention the autonomic system. POTS is a symptom of autonomic nervous system damage or dysfunction ( EDS does this). I believe many M.E sufferers have a problem with the autonomic nervous system.

I'd suggest reading up on these things for your friend regards her daughter.

Young people can get autoimmune diseases unfortunately. I developed ankylosing spondylitis by 19. It's generally rare though. That focuses on the sacroiliac area, can cause awful low back pain, sciatica and impact walking ad hoc when flaring up. Very unlikely at 11. But for anyone reading this, it's always worth putting my experience out there.

I had a neurologist ask me if I had body dysmorphia whilst wired up to arterial intravenous feeding, bedridden fighting sepsis. I had a bowel perforation and peritonitis that infiltrated part of my spine and temporarily paralyzed me. I was a living skeleton. And the neurologist asked me this.

There are too many hideous people who should not be allowed out their front bloody door, let alone in front of human patients.

What an incredibly ignorant neurologist, I'm so sorry that sounds awful 😢. I hope things are better for you now? Thank you so much for the info, I will show it all to my friend to see if any of it can help. Her daughters main problem is numbness and pain in her arms and legs. She's supposed to be starting secondary school in September but the school is huge and she really struggles to walk, and they've been told she shouldn't have a wheelchair as it will encourage her not to walk 🙄.