Psychogenic symptoms - FND

[Smich]

Can someone please explain this diagnosis on my medical records? Psychogenic symptoms - FND

Thanks.

[Louiselovesyellow]

I didn’t know what this meant either and googled it. Results quite clear - probably quicker to google it yourself but mainly movement disorders and fatigue, I think? 🤔 x

[Smich in reply to Louiselovesyellow]

Thank you Louise. It's the Psychogenic symptoms bit I don't understand, it being all in the mind. I thought FND was supposed to be 'real' not all in the mind, I just don't understand. The neurologist said it's real a 'soft wear problem', not its all in your head which is how I understand Psychogenic symptoms. I have involuntary movements, affected speech & gait problems. 🤔

[210272 in reply to Smich]

Hi again Smich,

Gait problems need assessing via someone highly trained in vestibular conditions and most neurologists are not so I would also ask for a referral to a reputable balance centre where they can look at you without a psychiatric lens. Speech problems can be indicative of migraine so a good neuro-otologist probably needs to be involved. Involuntary movements can be due to dopamine deficiency so a blood panel is necessary (please have them check your mineral, vitamin and hormone levels too and don't let them fob you off with 'low but within normal range' since that's very low indeed compared to 30-40 years ago).

I think your neuro needs to get up to speed - it is not appropriate for them to fob people off with that computer analogy, or poorly written notes and/or suggestions that your symptoms are generated by your psyche. They need to demonstrate the 'rule in' signs they used if they want to make a neuropsychiatric FN(C)D dx for you. Without those it's what's known as a 'wastebasket' diagnosis and none of us need those.

[Smich in reply to 210272]

Thank you very much for your reply. Very interesting. The dopamine deficiency very interesting. I did a DNA test a few years ago and it flagged up a number of things like the MTHFR gene and 2 copies of a gene which says 'Additionally, there will be lower available tyrosine, which is needed to create dopamine. Therefore there may not be enough dopamine, which can possibly lead to symptoms similar to conditions like Fibromyalgia and Parkinson’s (but not actually Parkinson’s). Sadly, my cognitive function isn't what it was and I struggle to understand what I am reading enough to take any of it to my GP.

It also flagged up wheat/Gluten intolerance which I knew anyway and avoid.

When my low folate was flagged up, I was simply told by my GP to go home & eat porridge & marmite. My b12 is always borderline or low. I did get my hormone levels checked & was told by my GP 'oh yes, your ovaries don't work any more.' 😲

Also raised MCV 105.

Unfortunately I was so angry with my FND dx and not being listened too, (this all started after abruptly stopping an anti depressant) my GP suggested I would benefit from seeing a psychiatrist. I refused intensive FND physio, so was therefore left to get on with it for the last 5 yrs.

When I did pluck up the courage to visit my GP last year because of extreme pain in my hands & feet, he wrote me up for amitriptyline (I refused to take it) I guess he though it was all in my head, so I'm still suffering.

I still can't accept my FND dx or the psychogenic symptoms and just don't know where to go with it now.

Thank you again for your reply, I am really grateful.

I just read your message below.

So it was a neurologist, Mr Massey, who said providing nothing organic showed on MRI , they would be looking at FND & that I may qualify for FND intensive physio trial. He told my GP that. I believe the psychogenic symptoms part may have come from my GP, I didn't see any mention of psychogenic symptoms in the letter from Neurology to my GP, only FND.

Psychogenic symptoms - FND, that is how it appears on my GP records.

I did ask for a second opinion with another neurologist, the referral was absolutely shocking and made me look like a basket case. After filing a complaint, I was referred to a neurologist of my choice for which I would have had to pay for. Unfortunately it was during lock down and got cancelled. Out of lock down, that particular neurologist decided he wasn't taking NHS referrals anymore.

Yes I am in the UK.

[210272]

Hi Smich,

In the UK we are not meant to receive a diagnosis via our medical records (last time I checked this is one of the reasons why medical records can be redacted). So if the diagnosis wasn't conveyed to you during the consultation (with full information about the 'rule in' signs used to make it) I'd contact your GP's practice manager and get them to investigate why you were not told the diagnosis during your consultation and what process has/hasn't been followed in the making of this diagnosis. They may ask you to put in a complaint but that's just more admin faff for you so unless they demonstrate that you have grounds for a complaint and that it will be upheld, I'd urge caution. I would also ask for a second opinion as a matter of urgency since once you have FND in your notes it's very hard to get rid of it and diagnostic overshadowing (where other symptoms or conditions can go under investigated or simply get ignored) is a massive problem for people with this dx, even if it is accurate.

Since you're in the UK I think it would also be worth contacting FND Hope UK about this and you can also post your question via the feedback button on Stone's self help site (neurosymptoms.org). What was the name and profession of the person who wrote this, if you don't mind me asking?

[Lecture in reply to 210272]

Look at that article :

sciencedirect.com/science/a...

[210272 in reply to Lecture]

Hi Lecture,

I've read that article but am not sure what the relevance is to Smich's issues with the way the FND dx has been communicated to her (which is badly, in my opinion). Very few people with FND have had fMRIs and the data from them isn't reliable anyway due to the differences in the tech and the differences in the tasks people are asked to do when in them.

I am more concerned about the weird hypothesis in this paper doi.org/10.1080/19585969.20... which seems to set out to prove that people with this condition may be responsible for getting it via conscious choice. I know they say that people are not morally responsible for this illness but that should go without saying. They seem to be hung up on the notion that unless there's structural damage, the symptoms must be psychiatric which is bonkers because we've known for ages that people can have migraine, tinnitus, binocular vision dysfunction, depression, Mal de Debarquement Syndrome, hearing loss etc etc without any structural damage to our brains.

Still, at least they are being upfront about 'functional' meaning 'hysteria' which should mean they can measure the term 'functional' on their 'propensity to offend' scale. For numerous reasons it's off the charts, as far as I'm concerned.

[Smich]

Only ever had an MRI wasn't even aware of a FMRI. Thank you. I will read again tomorrow.

[210272 in reply to Smich]

Hi Smich,

Unfortunately very few people with FND get fMRIs and the data from them isn't reliable anyway since the tech kit varies so much, as do the tasks people are told to do when having one. Meanwhile the FND dx should never, ever be made on the basis of a normal MRI alone and as for your neurologist saying that if nothing 'organic' showed up on an MRI he would be considering FND as your diagnosis, that's as wrong as wrong can be since there are lots of conditions that don't show up on MRIs, including migraine, POTS, dysautonomia etc etc. Having a normal MRI (IE one that doesn't show any structural damage) should not infer that your symptoms are psychiatric, especially since they started after withdrawing from anti depressants.

I'm not surprised you are angry and I totally hear you about brain fog (also common amongst people with migraine) and I would strongly advise you to record all your consultations from here on. If your GP did add the 'psychogenic' part to your notes I would ask for it to be redacted and, again, I would ask the practice manager to ask Mr M for evidence of the 'rule in' signs for his FND dx. If he can't provide them, then I would ask for FND to be redacted from your notes, too, and replaced with 'symptoms occurred after abrupt withdrawal from antidepressants' (this should also be recorded by the 'yellow card' system, if they haven't bothered to do that already).

You still need a treatment plan and I think individually tailored physiotherapy can have a beneficial therapeutic effect for the symptoms you're describing. However I would check the level of training of the physio concerned since some are only given one hour (costs £50) so that they can diagnose FND and I think that undervalues this patient population. Taking part in clinical trials is good in altruistic terms (we always need more robust data) but it can be time consuming and, of course, the trial parameters will limit how the physio is delivered.

Good for you for getting the DNA test Apparently we're in the genomic era of medicine so I look forward to the days when we'll know which meds might work for us and which could harm us, before we take them. That should save us - and the NHS - a fortune.

[IslandKat]

I've been variously told I have FND or at least 'functional overlay'. Can I second the person telling you to get tested for vestibular issues? I've just seen a balance specialist because my physio explained the dizziness and feelings of being off-balance I was having was because of visual vertigo. The specialist did a thorough investigation (neuro never has) and said I have non-compensated vestibular dysfunction which is what makes me have dizzy spells and balance issues. The good news is it's very fixable. Please get checked out by someone who has the right tech to look into it properly. Best of luck.