It was really nice to read Dave Rusell's post : "positive experience with neurologist and awaiting tests for further diagnosis" as nearly everyone seems to post negative comments about their diagnosis and that they are given little or no help.
It would be interesting to hear from you, in this one thread, if you have had positive or negative experiences in your diagnosis of FND and the support afterwards - and then do the sums from the responses to see how much we are being helped - or not.
Me:
Diagnosed FND Apr22 London UK. No tests were done yet I was told my symptoms " cannot be explained by an organic cause." My care plan was: sunshine, walking, excercising,meditation, looking at FND Hope/FND Action Websites.
The care and service from the neuropsychiatrist and NHS hospital where I was diagnosed -appallingly poor. I feel that I have been lumped with a diagnosis and then forgotten. I feel totally alone in my illness and have no trust in the NHS medical profession.
NEGATIVE EXPERIENCE.
What about you?
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Kangaro
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So I have had a long battle with getting to the bottom of my problems and on Tuesday I finally got all confirmed.I have been having symptoms for around 6 years and a lot of GP appointments! I have been back and forth to the doctor where I probably had a full blood count once per year (all okay) a urine & stool sample once per year (all okay) amongst many visits for other issues such as extreme fatigue, brain fog, pins/needles, back pain, chest pain, limb weakness, headaches, blurred vision, skin rashes, memory issues, speech problems, black outs, dizziness and more!
I was put on depression tablets which helped with my mental health but the random symptoms were still ongoing. It wasn't until I had second black out that they took me seriously and gave me an MRI scan with EEG.
After 2 years on the waiting list for those tests, I finally had them done in Jan 24 and got my results on Monday!
They said all was okay (no surprise!) And that I had got FND. They have now refered me to the FND department at my local hospital who will then give treatment plan and take it from there.
For 6 years I have felt like I am going crazy!ade to feel like it's all in my head and fobbed off a lot! Finally I can make sense of all the crazy symptoms and how they all link - the brain!
We got sent to that website twice, once in June 22 (CRPS) and again in Nov 22 (FND) and it was all done wrong. GP referred to Paeds, Paeds dx CRPS, no mention of FND (to us) but it was in GP's letter which I found out in Nov following Physio appt. OT referral rejected 3 times, put on a waiting list beginning of 2023,
Following Physio appt requested Neuro from GP, again done wrong. Sent referral to QE Adults (child 15 years then), QE forwarded to Childrens Hospital, Childrens Hospital rejected because GP can't refer, Paeds should have. Did parent or GP get advised of rejection, nope just disappeared into thin air until parent got to the bottom of what had happened.
Strong letter to GP, GP referred to Paeds, who then referred to Neuro. Neuro appt June 22, chased letter several times, told should be in drafts (if not did I have any notes) but secretary assured me referral done. Luckily in drafts, received letter Dec 23, referral for "talking therapy" done Dec 23, appoint for end of Apr 24.
In all fairness, it was bought forward (prob due to my voicemail to Neuro saying lying to patients is detrimental to their mental health and my son was lucky to have me bit other young adults may be struggling alone, or something like that. I wasn't rude just pointing out the facts and potential consequences). Sadly, my son was ill with this seasonal virus, so couldn't attend, awaiting new appt.
NEGATIVE
Paeds should have referred to Neuro and we would be a year better off and I would have less grey hairs!
The only team who tried to help were Physio and even managed to see Senior Neuro Physio (but that was because they could understand my distress).
Medical knowledge is incomplete so at best they could say 'no known organic cause' but that's not enough; they have to tell you the rationale for your diagnosis and what the 'rule in' signs are for it.
I would love to see a thorough survey of both positive and negative experiences but a lot of people who have had negative experiences leave groups like these because seeing it happen to other people, over and over, can re trigger their trauma which wouldn't be healthy for them. However since 90% of UK complaints about FND are due to disagreement with the diagnosis (and people also mention poor communication as a factor for their complaints) I'm guessing there are a lot of negative experiences happening that don't see the light of day. I'm also aware that people who want to change their diagnoses to a 'structural' one meet with psychological resistance from their neurologists and I'm finding it hard to imagine that that would be a positive experience.
Good to see a tad more patient representation at the upcoming FND conference but it's still too little, too late, for me. For example; Prof Carson is due to talk about Long Covid, not David Putrino, or David Tuller, or (for patient representation) the founders of The Sick Times.
Thanks to 210272 for explaining things more - I can understand what he's saying and why people leave groups like these because it retriggers their trauma. Reading the posts from people like nickibmibile - how can you not be affected? I am having private counselling for PTSD/medical trauma - for my illness, not being helped/believed by the NHS and for repeatedly going through the NHS complaints process.
I paid privately for a neurologist and to have private tests - and surprise, surprise after being ill for 5+ years we found organic reasons for my problems. This is just because the private neurologist listened to what I was saying and read the copious notes I gave him - AND DID HIS JOB PROPERLY. The NHS never did any tests on me. How can they automatically jump to a diagnosis of FND, whilst doing no tests and giving no "rule in" signs for the FND diagnosis?
I have had to sell things and use all of my savings to fund private care. I am lucky that I have had the resources to do it - but it has been so difficult. How many patients can financially do this though? The NHS is letting us down so much in so many ways.
I have made so many complaints to all those involved - yet you never get anywhere with complaints - anyone who has been through the NHS complaints process will understand this. Does the NHS not remind you of the shopkeeper in the Dead Parrot sketch of Monty Python?
When my private neurologist found out that I had been diagnosed with FND and no tests had been done, he wrote the following to my GP:
My own view about functional neurological disorders is that you need first to make sure that there is not any organic structural disease process which may need its own specific treatment, and although you can then get a superimposed FND, it is a very dangerous business in my mind to make the diagnosis of a functional neurological disorder if all the testing for instance has not been carried out, and if organic style treatments have not been initiated and complied with comfortably in the first place.
Thanks to 210272 for highlighting the work being done by the like of David Tuller.
Thanks, Kangaro and that's a great letter from your neurologist. Yes, some of the posts here are affecting but at least people have a safe space to share their stories and vent since holding in emotions can be very harmful in the long run. I am so sorry it's all cost you so much and am very glad that you are getting counselling for medically induced PTSD (which I see as 'a sane response to an insane situation'). I agree with your take on the NHS Complaints procedure - it should have come with a government health warning when I went through it and it was certainly a waste of my time although I did discover some interesting systemic stuff in the process including that consultants (even locum consultants) are allowed to lie to patients by saying that they are getting a 'copy' of the clinical letters when, in fact, our doctors get sent a whole paragraph that we don't (the 'mental state review'). I found this out via a series of clerical errors and was told this happens because patients won't understand the language used in this report but was then told it wasn't sent to me because there would be no therapeutic benefit but that still begs the question regarding why it was sent to my doctors since it breaches patient confidentiality. It was, much like the rest of her notes, largely inaccurate and although unreliable narrators are great fun in literary fiction, they are no fun at all in the NHS.
Since it won't be likely to breach your patient confidentiality, would it be OK if I shared what your private neurologist wrote in the thread under David Tuller's latest blog and with other interested parties? I think it would encourage them to know that there is good practice out there and that not all neurologists do what's known as 'patterning on elders' and do put the needs of their patients first, especially regarding FND which has so much stigma attached to it. Please take your time to decide about this since there's no rush and if you don't feel comfortable with me sharing it, I totally respect that.
That Dead Parrot sketch analogy had me hooting with laughter, thank you If there is good karma in the world the fortunes you've spent on health care will be repaid to you in kindness, if not in kind.
I thought it appropriate to check with my new private neurologist before saying OK to sharing his views further and this was his reply:
"Of course you must remain anonymous, but I have no difficulty not being anonymous myself. I do not seek any publicity, but I have no difficulty putting my name to opinion as I would if it was in the High Court as an expert.
What we know about FNDs is that you must be absolutely sure that there is not an organic substrate beneath. It is intriguing that in some people there will be a combination of the organic neurological and what is now known as an FND, and so again unravelling the whole picture becomes particularly important.
The so-called biopsychosocial model as described by Engel in 1978, also adds to this discussion.
With increasing evidence now that the condition of an FND does have physiological correlate, that is basically the brain getting it wrong without it necessarily being an anatomical, structural, or disease process, should not be a surprise.
As long as there is no suggestion of elaboration to convince (which in legal terms is known as malingering), then there has to be an explanation for the symptoms and problems that do impair a significant number of people."
So - yes he's ok with you sharing his views.
I just wish that a few (loads) more neurologists, neuropsychiatrists, GPs etc, would share his views. Once you have the diagnosis FND on your records you are treated differently and it is too easy for them to bung any symptoms/illness you have under the heading FND.
It is sad (and frightening) - but I now think of the NHS neuro consultants whom I have seen as modern day Quacks. They seem nice people but - how can you diagnose FND when basic organic testing has not been carried out.
Thank you and yes, it was very smart to check with him first. To make sure this doesn't get traced back to you via this Hub, please can you put what you wrote in a private chat to me, along with his name and contact details and the context in which it first came up. Once you've done that, we should both delete or edit our posts here. I think David would welcome the chance to interview your neurologist since that would have far more impact than me just posting his response in a thread that could get lost on Facebook. I know far, far too many women with rare conditions who have been misdiagnosed with FND and the diagnostic overshadowing stuff (IE where they bung any symptoms under FND even though they know they are not meant to do that) is a huge problem.
I am not a big fan of the biopsychosocial model because it often leaves out details about lower socio economic groups and FND is associated with people in lower socio economic groups. The FND people know it's disliked by patients but still carry on using it - d'oh!
Hi 210272I'm happy to do what you ask, but unfortunately do not do social media (only health unlocked) and therefore have no idea how to do private chat/what it is....?
Thank you At the top of the screen here I see my profile image, followed by 'My hub' and then the chat feature with a little paper aeroplane image and that's the chat feature here, which is private. I tried to find you via it but there are too many similar names so I couldn't message you via it but if you message me (as 210272 via it, it should work And, thinking about it, I don't think we need to worry about deleting or editing our posts since we both have confidentiality here through using nicknames. But if you would feel safer if we both did that after you've sent me the relevant information, please let me know. We can just edit out anything after our 'Hi' or 'thank you' My niece has just had her baby so if I am slow to respond, that's why x
I was diagnosed with FND following open heart surgery. I was physically mobile prior to the operation but woke up to none functioning lower limbs and weak upper body. I had physio as an in-patient and saw occupational health, neurologists and a neuropsychiatist and they said there is no physical reason for my immobility. They all diagnosed me with FND and since then I've very little input. I was in hospital from 6th August 2023 until 27th October 2023. I use a wheelchair outside the house and a Zimmer frame inside the house. I have a walker but most days I can't use it because of poor coordination and weakness. I have a frame over the loo because I can't get up from a standard loo My armchair has risers to lift it 4 inches off the ground and also a moulded "booster" cushion. I can't get in the bath so I have a bath board to sit on and I have to shower, I need help there too which is embarrassing. I have a perching stool in the kitchen and I can do some prep work at meal times but I can't lift pans etc so cooking is a challenge. I am very depressed as a result of all this, I feel useless and a burden. I feel like the medics have just said "no idea why this has happened, no idea how to treat it so well say FND and leave it at that". Sorry for the rant 🥴
No one should be made to feel useless and a burden - my heart goes out to you. I think it is unusual for operations to trigger FND onset but not unheard of so they should definitely be giving you much more support, especially now you are experiencing depression as a result of everything that's happened to you. FND is treatable, even in people who have had it for a long time and although not everyone recovers completely, many have seen good improvements. If your MP is any good I would talk to them and certainly get them to support you if you need to claim health benefits, need further 'kit' such as a hospital bed, or have a relative who needs to claim carer's allowance so they can support you too.
Well done for escaping the hospital - that length of time in a hospital would have me crawling up the walls cos of all the noise and lights and sleep disturbance.
Ranting is smart - bottling up emotions can do terrible damage to people. I'd ask your GP if talk therapy is available to you (from someone with specialist knowledge of FND or other long term conditions) so that you can rant out loud too. Meanwhile is there something you can do - or ask a friend to do for you - to give yourself a treat, even if it's just a small one? Anything that reminds you and your system that you are doing an amazing job under really challenging circumstances is good self care and we all need that. Epsom salt foot baths are my go to, when I need a treat.
Here's hoping your GP etc will pull their fingers out and stop fobbing you off with a diagnosis and leaving it at that.
Thank you so much for replying to me, I really appreciate you taking the time. I am struggling with everything right now and although I am trying to remain positive some days it's so hard. I've now found out that I am addicted to some painkillers I've been taking since last August. I recently ran out and suffered two days of agony before I got a new prescription. It was hell and not an experience I want to revisit. My GP has actually been great, I'm on a 2 week renewal of the prescription (Tapentadol 50 mg x 2, 4 times in 24 hours) and she's referred me for urgent help from a substance misuse counsellor. It feels like it's one thing after another, all trying to knock me down. I'm too young to feel like I do, I want to be "normal" again 😲. Anyway I really just wanted to tell you that your words made a huge difference to me and I have reached out for help/support about some of my medical issues. Thank you for caring, you are a very kind person 😀
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If there is good karma in the world the fortunes you've spent on health care will be repaid to you in kindness, if not in kind.
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