Having been given a "suspected diagnosis of FND" and being told by the neurologist in Middlesbrough that it's not really their thing and discharged, where do I go from here? He said he'd ask GP to refer me for CBT and he would refer me to Neurophysio. Are there any consultants who specialise in FND in the North of England that I can ask my GP to refer me to? Someone who knows and just doesn't "suspect". I need answers from someone who can say yes it is or no it's not because I suspect the latter. Thank you 🤞
Specialist in FND: Having been given a... - Functional Neurol...
Specialist in FND
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Chez57
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Hi Chez57
try here
fndhope.org/living-fnd/mana...
Also keep in mind that FND has become the lastest catch all for 'haven't got a clue mate' that a lot of docs seem to fall back on.
Then it's a quick 'CBT and physio' and you should be ok.
Unfortunately there isn't a lot out there, but in some areas there are informed specialists that have some ideas over and above 'CBT and physio'.
There isn't even general agreement about what FND is and what causes it.
Leaf
Thank you Leaf. That's what I thought when he said I suspect it's FND (really meaning, everything looks normal so I having got a clue, byeee).
I'll give CBT a go and try to have an open mind and not look back at my last bad experience with it. I live in a different place now so it could be better delivered up here.
I am looking positively towards the neurophysio but I guess it'll be a long wait for an appointment. I do have an appointment for the sleep clinic for 24th February and that's a telephone appointment. But at least it's an appointment!!!
Thanks for the link and it tells me what I expected - sorry mate we haven't got a clue - but it does tell me that they are trying.
I've just had a follow up telephone call with my GP and I felt she's not 100% certain it's FND. Got to stay on the pregabalin for a few more weeks and if it's not helping then to start coming off it.
Chez
I also agree that FND is an umbrella diagnosis and they don’t really know. I’ve worked with a neurophysio with some minor improvement. I am now doing what I can on my own. Water exercise is best for me as my symptoms have affected my walking. I have tried and also read about a woman who walks barefoot in sand, I like his but tricky to find a clear close beach with warm weather. I keep thinking there must be brain stimulating exercises that would help, as this originates neurologically?
I did aqua fit last week which I managed to get to the end. But no way could I even contemplate going tonight. Last night had my worst night since this started, could barely move and was in so much pain. Still think something is attacking my body. Booked appointment yesterday with GP but it's on 31st August!!!
no, I was diagnosed at James cook Middlesbrough 4 year ago and no they give you a site (hope one) and said you on your way. I paid for private neuro physio and she helped but to be honest I needed up getting my head around it by trying different meds, herbal and techniques. Mine was gate, movement and spasms and pain. Speak with someone I did CBT but wasn’t mine thing as advised what I was doing. Meditate - calms - walks if can
That was my experience of Middlesbrough. I saw a registrar first as a fast track appointment who was absolutely lovely and spent an hour with me. He listened and made me feel like they would help. But then on my second appointment with the consultant after my MRI and nerve conduction test, he was very nice and explained a lot of things about my tests but then as he wound down, it was a case of "I'll ask your GP to refer you for CBT and I'll refer you to Neurophysio". I asked what's next - replied not really our thing but there's a website you can read about it! I left feeling bewildered and abandoned and I still feel like that.
I've downloaded a meditation app which is great and helps me fall asleep and is helping when it all gets too much. I banged my head yesterday and had a mega meltdown. But maybe I needed it!
I think because it’s so broad and not well understood everything goes in it. Mine was movement and body didn’t want to be mine. I found trying different ways and things helped but then new stuff would appear and it was trying to work out what triggers it. I’ve had lots of new symptoms happen over the last few months but having to go for nerve and emg studies again as clinical weakness and atrophy happening so needing to rule other stuff out. I hate that when it happens you don’t know if it’s part snd parcel of it and drs don’t. I found my gps helped the most. I was on lamotrigine and anxiety meds but came off them as didn’t really work for me. I’m bk on different ones now for server cramps/spams throughout body and anxiety but hoping when settles will come off them. Not sure if any support groups in this area, I didn’t know anyone so joined this forum which helped. If your willing to pay and not wait months - Tees Neuro Physiotherapy based in billingham we’re brill
As far as I can tell, a robust, well communicated diagnosis is important. So if they suspect you have FND (there are several different types) but are not sure then I'd ask for a second opinion. Preferably from someone who has attended one of the FND Masterclasses described in this paper: dx.doi.org/10.1136/bmjno-20...
CBT and neurophysio can help with most neurological conditions so I hope you can access those soon, while you wait for a clear dx.
Thank you, I've just had a telephone call with my GP and she's not convinced that it's FND. I've to stay on the pregabalin for a few more weeks and if it's not helping then to start slowly coming off it. We had a long conversation about how I feel so hopefully I will have put thoughts in her head that might get her investigating things.
Sadly I think it will be a long wait for CBT or neurophysio appointments. I've just got a telephone appointment for the sleep clinic on 24th February!!! But at least it's an appointment.
Sounds like you have a very good GP 
If there are things you want investigating then it may best to be direct and ask about them rather than hoping she'll go ahead and do that anyway. If you do get the FND dx overruled (even a 'possible' FND dx can, sometimes, have an impact on future health care) then a) I'd ask her to make this clear in your notes and b) I'd ask her to record it as a misdiagnosis centrally, if that's possible. It's always worth contacting the booking clerks and saying you'll take a cancellation (if you're in a position to be able to do that) since a) that could mean you get seen sooner and b) it saves money for the NHS.
Sleep issues are rough with any neuro condition but I am slightly wary of UK Sleep Clinics so it's worth taking someone with you for your first appointment, recording the consultation and having a list of questions. I got asked all sorts of intrusive and irrelevant questions when I went and eventually had to discharge myself due to suboptimal management of the rare condition I have and because the clinician's notes were largely inaccurate. I'd also check that if they say you're getting a 'copy' of their clinical notes, you actually get a copy since the 'mental state report' was left out of the 'copy' I got but was sent to my (then) GP. Apparently this is systemic but I don't think it's OK for doctors to be able to read stuff about us that we can't read ourselves. They said it was because patients wouldn't understand the language used (so I suggested clearer use of language) and then changed their story and said they hadn't included that paragraph because it wasn't of therapeutic benefit. Yet they still sent it to my doctors ... hmmm 
Thanks, I've got a liver ultrasound on Friday because my LFTs were high so my plan was to wait until I've had that then I'm going to make an appointment to see her instead of phone call and take my list of a million questions and thoughts. And if finally it's not FND to ask her to label it as a misdiagnosis as I will not be labeled. Thanks for the input re the sleep clinic. Very useful to know
You're welcome and I hope the ultrasound can help with a treatment plan. Meanwhile you might find this interesting dx.doi.org/10.1136/bmjopen-... since it's from James Cook. I'd like to see a similar analysis from the patient perspective since we're often encouraged to submit complaints to improve services but rarely receive any feedback regarding any improvements, so often find it was a waste of our time.
Hopefully services at sleep clinics have improved but I don't want anyone else to go through what I went through, hence the 'heads up' from me. One of the most bizarre questions I was asked there was 'what does your family think is wrong with you?' because the consultant already knew my diagnosis and knew my family knew it too. She also couldn't answer clearly when I asked her what 'functional' means which was, erm, interesting
Happy World Brain Day and I hope your GP will be able to help
That was an interesting read especially the percentage who disagreed with the diagnosis. I can relate to that because being discharged and sent on my merry way, I felt as though it really could be anything. Also the fact that his letter said "suspected" - so my question is to my GP, what else could it be? I think if I had been given the opportunity for a follow up appointment I wouldn't have felt so abandoned.
My daughter was diagnosed with it in Leeds and her neurologist said he'd see her again in 6 months and then do a yearly review.
I wonder if I'm in denial or are my feelings that "suspected" really means - we haven't got a clue?
Being diagnosed and discharged happens a lot and I would put that into the category of 'dustbin' diagnoses because they are, basically, abandoning you (other than offering CBT and neurophysio). The 'suspected' part of your letter is also indicative of a dustbin diagnosis, in my opinion. The info from NORD states 'Treatment should start with a clear and supportive explanation of the positive clinical features that have allowed the diagnosis to be made, even though scans and other laboratory tests may be normal.' So since you don't seem to have been given that (I hope your daughter was) I think you need a second opinion, in line with your GP's thinking that you don't have FND.
Yes, I found that complaints stuff interesting reading, too. I find it objectionable that a neurologist said that responding to a complaint was a waste of time.
Thanks for sharing link, hopefully more health professionals will take Masterclass or create their own versions nationally.I recall reading the way the medical practitioners diagnosis FND, basically it doesn't fit in any box and have had first had experience of GPs lack of knowledge and poor delivery. Its not just the individual that it affects mentally (although they sadly suffer the pain as well) its the whole family unit.
When I downloaded the Handbook for children and read through at the end it gave a sequence of diagnosis from GP to referrals they should have but in personal experience that wasn't necessary the order and not all referrals given. This book was written as a resource to help understand and manage FND symptoms for young children and adolescents and yet many that we turn to do not. I am tempted to give our GP a copy of it to make sure all referrals are done to help other patients and families.
I glanced at the resource literature referred and have sent myself this link to read through to gain knowledge to help support my son whilst waiting "talking therapy" referral.
Hi Chez I am a few miles up the road from you just over the Scottish border, the Neurosurgeon that I saw recently suspected FND, he had studied with Prof John Stone. I had a series of tests to rule out other problems, these all turned out clear so with a provisional diagnosis of FND and referral to the specialist team in Edinburgh for further investigation, the only problem is a 14 month waiting list. My meds have not been changed but just added to for each individual problem as it has arisen, all the GPs seem to have an aversion to removing medication. I have also PTSD which lives alongside the diagnosis of FND which makes life interesting.
FND was described to me as follows 'think about your brain as a computer, you have hardware and software, these two need to talk to each other using the correct pathways otherwise you get nothing, so our brain is operating in this way whereby all normal pathways are missing and we are making alternative pathways which are not correct or each aspect is not just talking to the other aspect.' In my eyes this means we are somewhat messed up and trying to sort it out is a minefield, we deal with one bit at a time and hope for the best.
not really helpful but hopefully makes a little less cloudy this possible diagnosis
Thank you Tankie. I'm in the Yorkshire Dales so more than a few miles away but love it up your way. Middlesbrough is an hour away from me but it's the nearest hospital that deals with it.
From reading replies it seems that specialists are far and few between.
I've had a full MRI head and spine, and nerve conduction test and both came back normal.
I was told by neurologist about the "computer/brain analogy", I think I need some defragmentation lol.
Thanks for the reply, let's hope something gets sorted for all along the way.
Maybe we should meet up, next time I'm up in Yorkshire I really don't like the 'computer/brain' analogy and that's all it is, an analogy. However I did enjoy this, a lot (you may need to google it since I don't think it's a live link):
Why your brain is not a computer | Neuroscience
Yes that would be good. Although Yorkshire is the largest county and you could be in Yorkshire but still miles away!
I have just started saying that the fabric of my brain is ok, it's just sending out the wrong messages. My friends and family would say it's been doing that for years lol. 😜
Yes and I don't have transport so it might be tricky, but I can get a train to M'boro. I'd be cautious about saying that until your FND dx is either confirmed (with a clear and supportive rationale for it) or denied but obviously that's a personal choice.
Not sure how they turn a "suspected" DX to a definite one if there is no specific test etc and your MRI and nerve conduction test show to be "normal"! I feel I need to have some kind of way to tell people what I'm experiencing so I don't get the "it's all I her head" looks. When I do get a definitive DX of whatever it is, I'll be happy to spread the word.
M'boro is an 80 mile round trip for me, sadly it's the nearest hospital that deals with it. The other hospital is Northallerton and that's a 40 mile round trip. But I guess that's the downside of living in the sticks. The upside is it's beautiful.
FND diagnoses are not meant to be made as a result of normal test results so I hope that if you do get diagnosed with FND they give you a clear rationale for the diagnosis. And if you don't, that you get an apology for all the confusion caused by a 'suspected' dx which was unsubstantiated. And for wasting your time regarding the 80 mile round trip and any costs you incurred.
My late Mum used to work at the Friarage in Northallerton Yorkshire is, indeed, beautiful
You could ask your GP to refer you to Mark Edwards at St George's in London. He's the top guy in England. I had to wait for 6 months but it was worth it. It's a national hospital so they will send a taxi for you.
Thanks for the info, but I don't think they'd send a taxi to North Yorkshire. But glad it was worth the wait for you. Good to hear that there actually consultants specialising in it out there.
I asked the taxi driver they sent me and he said they'd sent him all over England, from Cornwall to Newcastle! It's because the hospital serves all of England apparently. I was pretty impressed.
Wow that's amazing! We have to drive a 80 mile trip to get to the hospital and living rural we don't have much in way of public transport to it. I guess if we didn't have a car it'd be a case of sitting in an ambulance carrier all day for 10 minute appointment! I may now look at that option when I get a definitive DX or not as I guess the case will be. But need to explore some other things first.
Hi have you had a brain scan? Ask for a second oppion from another neurologist. We only get general neurology consultants.
There is a consultant in scotland who is a Dr Stone.
Hope that helps?
Kind Regards,
Thank you Birdr, yes I've had a full head and spine MRI and a nerve conduction test. I've got an ultrasound on my liver on Friday and once the results are back I'm going to do just that. I'll look up Dr Stone. But depends on where in Scotland he is. Seems I'm in the middle of where any seem to be.
I believe we all need to tell our consultants that more funding needs to be put into research and also help medically and otherwise to help people with FND. It can be a temporary illness - I am determined this is the case! They have a duty to help us. I believe they just let us down when it isnt as they think more serious and it is. There isn't an even playing field in the neurology centres and we all need to voice this as it's somewhat pathetic. Does anyone agree? Kind regards to all.
I'm sure the consultants would agree that there needs to be more funding, it's the bodies providing the funding that need to be told. But I guess that's what this website/organisation is working on. I think if "it's not their thing" as was said to me then there needs to education on who's thing it is and an onward referral given rather than being given a website to read about it and CBT and Neurophysio.
I agree you can't just ask someone to deal with it themselves esp when its deemed to be triggered by stress or trauma does that not just add to the stress ... worsening the symptoms. Some of the stories one reads and the symptoms they endure are frightening (luckily my son isn't doing the research, only what I forward/suggest may help). I can't help thinking that in his case if he got the Chronic Pain referral two years ago when dealing with a common teenage condition that one grows out of) that that could have been managed and the falls and consequently numbness, spasms and drop attacks would not have happened.Fact, stress can worsen symptoms and meditation can help, so they really need educating badly, more awareness and more believing too.
Hi Chez, this is all very confusing and stressful isn't it? The same thing happened to many of us who got Long Covid and/or were injured by the horrid vaccines and on the UK CV Family Fabebook group, there are many accounts of people having developed muscle weakness, twitching, uncontrollable movements, gait changes, tics, voice and swallowing changes, etc, sometimes right afterwards and sometimes many months later, but perhaps had some smaller symptoms of feeling unwell from shortly afterwards. I'm not saying that this is the cause for you too, but since everyone of us weren't asked about whether we had the infection or if we'd been injected by the 'carrot' (we have to use code names because of the horendous way people are being treated for even suggesting that it could be that. Many of us came back with normal MRIs, standard blood tests, but since many of us are unable to work any longer and the neurologists and all doctors in fact, never learnt anything about inflammation of the brain from any causes apart from very specific ones, we've had to all learn a huge amount about body systems that simply aren't taught about and haven't been researched. Fortunately there have been great researchers around the world who have been looking into it now and although we've had to get private tests done, we are all testing positive for specific cytokine and interleukin tests as well as particular antibodies that have been kicked off by an over zelous immune response to the 'spike protein' that is in the infection and the vaccine. Many of us have microclots which are potentially blocking oxygen getting to the microvasculature of the brain and muscles (rather getting larger clots that are picked up in the large veins and arteries by usual tests) and we have had to request special tests to show that there is something going on. Scientists are trying to devise better tests that we can access quicker that clearly show these micro clots - the clots are caused by inflammation of the blood vessels which is very common after a bad virus, infection, 'carrot', antibiotic and other psychotropic medications, toxins and gut changes of any type. Gut changes have been by many scientists in sufferers recently and this is leading to impacting our ability to break down certain fatty acids, which is the compromising our ability to produce the vital nutrients the body needs to produce energy for our cells and acetylcholine, which is a vital neurotransmitter that tells our nerves to contract our muscles. That neurotransmitter is possible at the centre of everyone's problems with movement and muscle weakness disorders and inflammatory causes of any type can potentially lead to a dysregulation in it. There are lots of tests that can be done to see if any or all of these things are at play, but we've all had to give up mostly on the 'medical industry' who seem happy to throw us over to an ever more unscientific area of medicine being psychological services and sometimes physiotherapy, where most of them have no idea what FND is or have been told the most ridiculous things about it. The fact is in our opinions are that CBT can be helpful for everyone on the planet, as can psychotherapy if done well as we all have issues we'd like to talk to someone about. Relaxation methods are great too and can certainly assist in the healing process. Some people are lucky enough to find that they improve quickly, but this can be that the body is just healing the inflammation from the organic trigger. The problem is the inflammation could easily be triggered again by another virus, infection, 'carrot', etc. Stress is a layer that adds to it and since life is stressful these days for many of us anyway, plus losing control of your movements or other neurological processes suddenly or even gradually is super stressful, they are themselves adding an incredible layer of trauma to the situation, with the dismissive way they treat many of us. Some are kind, but they are taught stupid things about it and use this condescending explanation of software and hardware, which to most of us seems dumb because that isn't the way the body works, they just know that they can't get away with their honest reason being that they don't know because they haven't been trained to think outside the blood test and MRI box. I am being mean as a lady yesterday said her neurologist has sent her for special antibody and mitochondrial tests, so the odd few are clearly good, but going on the thousands of posts I've read, people are being diagnosed with this willy nilly. They never seem to consider medications the person is on either. I was on two medications that both can cause movement disorders, they ruled them out immediately and that's negligence. The hoover sign is not 95% accurate as is claimed, this has been chalIenged by various researchers. Uncontrollable movements are also distractable in patients on various medications and this means there could well be other causes they aren't taking into consideration. Medications for so-called psychiatric diagnoses are some of the most profitable for pharmaceutical companies along with ones used for pain - pregabalin and gabapentin seem to be given out like sweeties at the moment. All of these drugs can have really awful withdrawal symptoms and can damage the nerves over time. Doctors are never taught how to safely get people off them. I am going to request a full report on all the differentials they had ruled out before giving my diagnosis, which I told them had to be changed to 'possible'. FND should always be the very final diagnosis. Push for more clarity and leverage the great GP you have. Most of them know that FND is being over diagnosed and they are being dumped with lots of confused patients who they then have to find CBT and physio services for, which have long waiting lists. Good luck x
Wow. I didn't have CV as far as I know it and I didn't react badly to any of the vaccines. But bearing in mind everything I read in your post I did have a very large tick on my back about 3/4 years ago. I was on doxycyline for a month after it came up in the typical red bulls eye. I was supposed to take my motorbike test on the morning the bulls eye appeared and I woke up not being able to move my head and my neck was swollen, so had to cancel it. It took a couple of months before I could take it (and passed first time in all 3 parts). I've had joint problems ever since but now they put it down to my age. Doxycyline left me with such a dry mouth which after some time did return back to normal. I had a blood test for Lyme Disease which .... Wait for it ... Came back negative. However, the blood test is not always conclusive as it can still come back negative.
Like I said in earlier replies I've got a big list of things for my GP to investigate and if she doesn't then I will be looking elsewhere.
Hi I agree about the Neuro transmitter Acetylcholine! The Consultants though when you mention this and other things just bat their eyelids and are very uncomfortable. I've recently made a constructive complaint to my Neuro Centre about them losing x2 referrals for nearly 3/4 of a year and then not having the ability now to offer what I was being refered for but not saying this as they are so underfunded so only offering help to FND sufferers with seizures. The FND I have was caused by horrific circumstances and I'm challenging the Centre saying that they are discriminating people's symptoms by not triaging for health and related circumstances but based on their lack of funds so marginalising others who don't but who also have symptoms which are just as bad. Is there anyone else that's made a constructive complaint so that we can challenge them mote than just us seeing them at appointments where you can be ignored all so that we can get them to recognize that we don't have to stand by and accept the less than 2nd rate care we aren't even getting? There was a report made in the North West of the UK called Its all in the head' it covered all of the Neuro Illnesses and yet nothings changed - I think if more of us where to constructively complain with the help of another health organization to advocate and or witness the on-going situations of this overall lack of anything that helps this illness then they would be forced to make change. It's so wrong as it has been for anyone with a severe Neuro illness to get the help, advice and therapies they need when many who have other illnesses do! My mother had MS when I was a child as her carer and other loved ones had neuro illnesses too its simply appalling in the UK. With FND we don't get specialist nurses, as many follow up appointments, or psychological help. We don't get physiotherapy either even though FND is more painful for some of us than severe arthritis! It's a very backward system and it is important to challenge the health services to make change. I've done this most of my life and it eventually does make some change. Therefore I would be interested to know how others have got on or from others who might be prepared to do the same as I. I have recently had an apology for appalling service whereby they failed there own complaints policies and didn't offer a Resonable Adjustment under the Equality Act in the Uk to contact me in a reasonable way. I am again to follow up and respond to the apology and after already contacting the CQC and reporting matters when I didn't get a response after months and months I will now be opening a case with the Parliamentary Ombudsman and speaking to an MP and still letting my local Healthwatch witness the situation. As this illness is curable and can cause something so severe as Paralysis - then the NHS or whatever healthcare system should help and put maximum effort into helping patients get better and right now they do next to nothing! If anyone else is interested in sharing how they have got on with matters like this then please let me know. I did think of getting together a petition and asking FND help uk to get involved but I'm not sure. Thanks for reading! Best wishes to you all. P.s. A local Physiotherapist who I went to recently who works in my local Neuro Centre informed me that they are thinking of putting a business together to put some therapies for people with neuro illnesses. This is due to pressure but FND might again be excluded. If more where to stand up to their being next to nowt - just seeing a rather vague and uncomfortable neuro consultant then that would be something. We need physiotherapy, self help support groups, pain specialists, specialist nurses, etc just as a start.
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