I am in abject shock that an fnd group exists and hope it is simply a way for all of those so terribly misdiagnosed to share experiences and suggestions to help identify the true nature of your suffering.
I have watched a number of videos now care of the wonferful Jon Stone- fnd champion/ hero to all! I am absolutely flabbergasted. Many of the problems his patients describe are just like mine - I have ehlers danlos syndrome, multiple autoimmune illnesses including sjogrens which can do a real number on your autonomic system. The damage or changes to the autonomic nervous system ( very real physiological changes) can explain so many of the problems attributed to this fnd nonsense.
I was given the most ridiculous of ridiculous explanations for my suffering and metaphors such as soldiers feeling pain after battle when there was no injury due to ptsd. I had to go alone and pursue every test going to prove what was happening to me. I have my proof now. It was not easy. I was almost convinced myself it was all part of some functional nonsense.
Happy to chat if anyone likes to about this!
Just to confirm that for all my auto immune diseases i am seronegative. No evidence at all in bloodwork which makes things very difficult and will lead to constant fob offs in some cases.
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Joanna36
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Hi, I agree that people should be doing their best to carry on pushing if they are unhappy with this as a diagnosis. The fobbing off smacks of a funding issue to me, a very sinister and archaic one.
By the way, if you are shocked by this group, you should see the Facebook groups! Lots of very, very unwell people, most of whom have accepted this diagnosis and who get no help whatsoever. Highly disturbing. Some given this label with no prior testing at all.
I've seen desperate people be advised by their peers to 'just wear diapers' or 'walk on your hands if you cant use your legs'...no joke..what century are we in again?
My god that is so disturbing. I honestly believe I could do a better job than half these neurologists. Despicable.
The problem with people like Jon Stone are that they are very personable and friendly and reassuring so he could almost talk me into believing it. Let us bear in mind that this person has received 2mill in funding, it is therefore important that this is seen to pay off and fnd diagnosis are coming through the ranks. Ridiculous in this day and age.
The Hoover sign be refers to was determined 100 years ago! Come on this is laughable
Thank you for writing this post. I am currently feeling trapped in a fnd diagnosis, being told by the fnd service that I have to accept the diagnosis to access any support and my gp is offering nothing else.
Can I ask what tests you pursued for autoimmune diseases? My gp won't refer me anywhere else or do any tests until I've seen the fnd service, and I'm seeing them soon and want to be prepared for what next. I am kind of naively hoping that someone in the fnd service will see me and know what is actually going on, but as fnd can encompass almost any symptom, this is probably unlikely.
If there is any possibility of you going private and seeing a different type of specialist then this could be the best way to overturn FND for something else. But what else depends on if you have other non neuro symptoms such as hypermobility.
Or you could insist on a second opinion referral in a different hospital if you feel your symptoms don’t span cardiology, endocrinology or Rheumatology for example.
Eisforel I really sympathise with you my friend. It has been quite a battle for me. I have a multitude of autoimmunes but the most disturbing one for me, the one that triggers anxiety and could definitely look like fnd is sjogrens. Myself and many others have seronegative type which means all bloodwork is normal. I had burning skin and horrible weakness and palpitations and problems eating and rapid bowel dumping as my first symptoms. I was very sick anxious and looked like someone having a mental health breakdown. I knew it was more. Sjogrens can attack the small fibres and autonomic system so I went for private testing. I had to pay and have lost all my life savings. I saw a Professor Anand at Hammersmith to sample my skin via a biopsy and this showed small fibre degeneration. I then had thermal threshold tests which showed sensation was greatly impaired.
For sjogrens I saw Dr Elizaoeth Price in Swindon - privately again. She carried out a lip biopsy to detect inflammatory cells in the up glands. This is the only definitive test to diagnose sjogrens when your blood work is clear! No one would do this for me bar Dr Price - so convinced was everyone that I could not have this.
Next I paid again!...to see Professor Matthias who carried out autonomic testing. This was quite detailed and proved i have quite a problem with that. If you look up autonomic system dysfunction and something called POTS you will see just how far reaching the symptoms can be. Dissassociation for example is something I suffer terribly from - but it only came on when I felt the nerves in my neck and skull being hammered by sjogrens. Also having POTS means I have very low blood pressure and oxygen does not get up to my brain quickly enough. This is enough to make you feel off your head!
Dr Gall in London is a wonderful neurocardiologist who is one of very few well versed in autonomic issues and the fact most of us ( mainly women) are labelled as hysterical because any heart tests appear normal and our symptoms therefore look like panic attacks or some other psychological problem.
There is another condition many of us have called mast cell activation disease. It's not quite the same as allergies and is an excess release of histamine in response to a variety of stimuli from food to medicines to certain products. Getting this diagnosed is a minefield but loads of support on fb groups. This can give you awful symptoms including cognitive ones.
Finally, I discovered last year I have ehlers danlos syndrome - the route cause of all my problems and the reason I'm susceptible to such heightened autoimmunity. My latest lovely problem is colitis/chrons. My bloods were totally normal when half my intestines were being eaten alive so fobbed off there for some time. They couldn't deny results of that in the end but for a long time my scopes were clear!
The awful conclusion is I had to pay and pursue all this privately. I lost all my savings but I have proof now and am able to claim benefits now I'm unable to work. So just to summarise, look up the following and see if you think any of your symptoms could fit -
Do you know if one can have seronegative lupus - like those suffering seroneg sjogrens? And if there is zero evidence visually or via bloodwork how would one start the process of trying to get diagnosed?!
Horrifying to read about the viral encephalitis. Not surprised one bit though. Where is my 'neurology for absolute dummies' book because I think I'm going to train myself and charge 350 an hour to do a better job. Despicable.
Thank you so much for your replies. Lots to look into. I tested positive for POTS with tilt table test but the consultant was really dismissive of it, and when I didn't respond to fludrocortisone discharged me to be referred to FND service with no real explanation of why. He was also a cfs/ME specialist and said he didn't think I had cfs although again didn't say why. I was pleased about that at the time because I hoped it meant they'd work out what's going on. I saw a neurologist once who noted that I have limited sensation in my extremities but as the nerve conduction tests were fine, I wasn't seen again.
It all started with a sudden onset of symptoms, a dizzy spell at work, that has led on to increasing levels of disability, almost 2 years now. My walking is poor, a few metres and my legs start shaking and giving way, I am very fatigued and feel generally unwell all the time, worse when I'm upright. I suffer with nausea, worse when I've been trying to do too much or had less sleep than my usual not brilliant sleep. Temp control is rubbish too.
I have had mental health problems in the past and this is not related, but of course with it on my records, my word becomes unreliable. I think it's part of the reason I'm scared of pushing too hard to be seen, I don't want or need another reason for medics to push me onto psych diagnoses. I'm scared that pushing for an alternative diagnosis will play into their hands. I was dismissed by gps for the first 8 months, almost certainly due to my history, although a psychiatrist who saw me early on, as I was just being discharged from mh services, said the physical symptoms are not psych based, something which is dismissed by medics as "they all say that". It's all very frustrating.
That explains so much of it already for you! So POTS is just the manifestation of symptoms not the original 'disease' or condition. POTS is most closely associated with sjogrens from an autoimmune perspective I understand. Sjogrens will attack your autonomic system and also causes many of us cognitive issues- brain fog, bad anxiety, panic feelings and depression for some. It makes sense when you think your autonomic system controls your fight or flight responses. Also POTS is only one element of autonomic dysfunction. I have more than just POTs.
The other very closely associated condition causing POTs symptoms is ehlers danlos syndrome. Also difficult to diagnose. Was told for months no you don't have it by about 4 professionals. I just knew I did. Prof. Matthias and Prof. Rodney Graeme confirmed the very obvious systemic Eds i was suffering from in the end. All costs money though. I fear you will really struggle on the nhs. Dr Gall is brilliant. He sees nhs patients specifically for autonomic/ POTS issues. I would want to get a referral to him if possible. He knows all about eds and other issues which contribute.
I failed various poor man's tilt table tests but still knew I had it. It showed up quite evidently in the end xx
It must be very frustrating. As a former therapist, anxiety sufferer and one who has had a couple of serious depressions I know FND is a real thing, BUT no matter what a doctor MUST take us all seriously and investigate the physical symptoms thoroughly. My son had a bout of FND. His symptoms were like those of MS. He fell, legs and arms too heavy to move, ect. His GP did take him seriously and referred him to a neurologist who did a great job. When he was given the news there was nothing physically wrong the symptoms disappeared. We've never really spoken in depth about it, but that was many years ago and he's fine.
I have a fear that I'll be tossed aside by the Rheumy as I have anxiety disorders. So far tests negative. As time goes on my symptoms are very much like RA. If I'm not showing swelling at the time of my visit I fear he may tell me I'm fine. I'm not. Whatever it is it's NOT PSYCHOLOGICAL. I've had many physical symptoms from anxiety through the years, but the joint pain, redness and swelling are not anxiety related. It's so frustrating how easily doctors throw out real symptoms and chalk them up to psychological problems. All because they can't figure it out!
Sorry for the rant, but just couldn't help myself.
I hope this doesn’t seem too bossy but I’ve been under Rheumatology now for 8 years for RA and now for Sjögren’s so these are just my tips.
Be sure to take photos of any swollen joints and take these with you to your rheumy appointment. I would also recommend that you take a one page symptom list with you to give your rheumy at the end of the consultation.
Also, if you haven’t already, it might help you to get copies of your blood results for all including inflammation ESR/ PV and CRP so you know your own baseline. And, if possible, don’t take any anti inflammatories or pain killers for a few days prior to having your bloods done or prior to your consultation as even one ibuprofen can skew things.
Similarly with Sjögren’s, up to 30% of RA is seronegative ie doesn’t show up in bloods.
So you think ibuprofen might affect results? Idk but logic says it could. I have had testing done when I’ve taken it. They said it wouldn’t matter, but I’m skeptical. Btw you’re not being bossy at all. I’ll take any advice I can get. 🙏🏼 thx
RA should show up in your bloods if positive but I can appreciate your concern. Dont let this Rheumy toss you aside go all out and ask for the correct testing.
I know early on in all this, a doctor expected me to be cured by the news my mri was all clear. I really wish that had happened. Drs trying to persuade me that I'm not actually ill isn't working. I have tried to believe them and persuade myself that I'm not ill, but it doesn't change things.
That feeling of having experienced mh problems and knowing that this is different is a very familiar one. Not being believed is so incredibly frustrating. I hope that your experience with the Rheumatologist is better than you fear and that you are taken seriously.
Seronegative Lupus is much rarer than RA or Sjögren’s apparently. But it can be diagnosed at the few centres of excellence - the London Lupus Center for example. I have a friend who was diagnosed with FND initially but finally got rediagnosed with CNS Lupus.
Or sometimes Lupus Nephitis can be diagnosed by kidney biopsy. Same with CNS Vasculitis.
I also have a friend who was misdiagnosed with epilepsy but turned out to have kidney failure. She had her failing kidney removed and the seizures stopped immediately and never came back. It took ages to get her neurologist to accept this though so a long while before she got her driving licence back.
Well I guess that, having reached their professorial or consultant status, they assume we will listen and believe everything they tell us.
But when people do and their consultants discharge them with FND, without the full gamut of testing or any follow up - many people will use the internet to do their own sleuthing and soon realise that even professors can get it wrong. Like rheumatology, neurology isn’t usually a black and white science.
If I hadn’t been too unwell I would have pursued a sponsored PhD place myself. So I think this means I’m less impressed by status and more impressed by doctors who are good detectives and actually choose to listen and believe their patients.
Yes I couldn't agree more. It really isn't about knowing everything you are right. Just listen, believe and be willing to do what it takes to find the answers- even if that includes going on Google and researching like we all have to.
...Or phoning their colleagues in other specialisms for advice with results of brain MRIs and lumbar punctures, blood results and symptoms. I have read of some here diagnosed with FND who haven’t even been offered any of these kind of investigations - just a few reflexes tested and bingo - “it’s FND off you go!”
Yes it is unbelievable and the reason I undermine the value or skill of neurologists so often.
I had asked so many consultants to just speak with a sjogrens expert in the u.s a who was more than happy to talk to them about my complexity and trying to manage it. Not one took it up.
Most of these you list could also be caused by autoimmune encephalitis. Have you had the antibodies tested for that? I think any doctor can draw the blood and send it to a lab that does that kind of testing. Mayo will test but I’m not sure of others.
The real trick is trying to find a neurologist that is a good detective.
My son has been diagnosed with FND after over a year of horrible symptoms, including an episode for about two months of psychosis. He was Sarapositive for ganglionic Achr antibodies but not for something that they could attribute his symptoms to, so they say. Now they have found that he has possible thyroid cancer and they’re going to remove the thyroid because of that and also because his thyroid is covered with nodules. I’m hoping removing the thyroid will clear things up. I think he has autoimmune encephalitis, or paraneoplastic syndrom, or possibly Neurosarcoidosis.
This new diagnosis of FND is ridiculous, and it is coming from Mayo Florida. He is 45 and is now having all kinds of neurological problems but no pain. Many of his blood tests have been way out of range but now, after a year, this is what they come up with. I’ve never been so disappointed with doctors in my life! When I ask about the high blood tests, they tell me that since he Has had so many blood tests, they were bound to find some that are out of range. I cannot believe this answer. I thought they did blood test so they would see what was out of range so they could treat it.
Yes! I am actually discovering the same thing! My "FND" was actually a severe vitamin d deficiency, and B12/Folate deficiency that caused neurological issues. The rheumatologist that I went to believes that this scenario triggered fibro to kick off. But my family has a long list of auto-immune conditions, and stomach issues, so I'm not completely happy with this diagnosis either. I felt like the fact that my symptoms improved significantly after having steroids indicated that there was something more going on. According to the rheumatologist I definitely have inflammation. But it's not "severe enough" to require treatment. I'm not accepting this as an answer. At least it's a step in the right direction though. I doubt I had FND at all now.
Re; inflammation, I went to a rheumatologist in August who suggested I may have Polymyalgia Rheumatica and to trial a course of steroids. I didnt because 2 weeks later I saw a neurologist (as I also had neuro issues) who said NOT to try the steroids, did a load of testing and gave me the FND tag.
After being dumped with this label and still unable to raise my arms, do up my bra or walk properly, I contacted my GP in december and said I wanted the steroid trial...AND BAM..human again, yet on steroids.
I still have no idea why I listened to that neuro over the rheumy but I could have been feeling better in August!
I was on steroids for a nasty sinus infection, but noticed that all of my symptoms were gone, or significantly improved. The symptoms came back as soon as the steroids were done. There's too much risk to stay on prednisone long-term. I knew that already because I've been on it before. But I'm working with someone else to potentially try low dose naltrexone (he wants to see my labs before going forward). I'm hopeful it will help though, since the prednisone does.
Low doses aren't so bad. Sadly PMR can last up to around 5 years so I am in it for the long haul. The idea is to get to a low enough dose which manages the pain and inflammation. After two years of being very sick, I am in no rush to get off. lol
I’m trying to persuade my rheum team to let me have steroids again for flares. The problem with FND (even overlay) is that rheumatologists can also be swept along by neurology input. So this is the inherent danger of FND - almost every symptom we describe can be attributed to functional and they stop looking and we stop flagging up our symptoms. At least that’s what is happening to me now.
Yep Twitchy, and that is terrifying. Talk about black and white thinking - as if people cant have more than one thing going on at once!
If it wasnt for the fact that I had re-referred myself to seperate hip and shoulder specialists before I had even left the neurologist's car park, I'd still be stuck unable to get dressed...at 50!
Thanks Mic. I’m being seen again by connective tissue disease clinic at the end of this month. Not very optimistic that they will do anything to stop my neuropathy progressing to even further numbness everywhere. Each pain flare leads to more numbness and I can chart this as non demyelinating (so far) immune mediated neuropathy with my fluctuating inflammatory markers.
I’m so paranoid now that each symptom I describe to any doctor is going to be viewed as functional. I am seeing a consultant anaesthetist at pain clinic in 3 weeks and I just hope I can find an ally in her perhaps. I know my neurologist is keeping me under review at least but, as I explained to her, many with FND as their primary diagnosis don’t get follow up.
I told her I want the 2 million research funding (more now I believe) to go into rare rheumatic diseases and their neurological manifestations like mine - not into sentencing innocent people to this functional fate. 🤷🏼♀️☹️
I am lucky that I was already seeing a neurologist for my migraines. He really doesn't address the FND symptoms at all, other than to say "the part of your brain where migraines come from is overly sensitive right now". Ok, that's all well and good, but how long will it be "sensitive" for???? I have an appointment in April for a new PCP at Mayo that handles inflammatory conditions. I'm hoping I'll get some more answers with them. It's just all so frustrating, and such a long process.
Get tested for autoimmune encephalitis. Also test thyroid antibodies. The steroids making you feel better, is a big clue for both of those. Also Neurosarcoidosis.
I will double check the antibodies. Thank you, this is good info. I know that "some" antibodies where checked, and they were elevated. I'm not sure if those antibodies are specific to the thyroid though or autoimmune in general.
My son tested positive for ganglionic Achr antibodies and still they are saying he has FNDs, his neurologist is saying it. He also had many other test that were off, he has thyroid nodules and poss thyroid cancer. He has been very sick over a year with neurological problems and this is all they can come up with! We are seeing doctors at Mayo Florida!
I had an 'assessment' by a neuropsychiatrist(wanted a neuropsychologist!)who was told to fob me off and handed me a card with FND with no explanation! I have no physical symptoms associated with what i've found on Google for FND. I've given up bothering to get Neuro to do anything-impossible to get any referrals unless unrelated MH,who won't treat me as i'm not MH,am brain injury related(PCS/focal seizures!).
FND has become the catch all diagnosis for anything neurologists don't understand. What makes things worse is doctors are now being encouraged not to do tests in case it makes patients more anxious and makes them believe their symptoms are the result of a physical illness.
My own illness started in 2005 after having a flu jab. I had had numerous infections over the previous year and had been ill the week before the flu jab. In fact I don't think I was really well.
The next day I had pressure in the left side of my head and altered sensation down the side of my face. I became extremely fatigued and found it impossible to do much before I had to rest. At first, I tried to walk about a mile every day, but walking became increasingly difficult. Eventually my gait became so bad that I had to use a walking stick, and could only walk very short distances. I also developed involuntary movements.
I saw my doctor and two neurologists during that year. I had Two MRIs, a lumber puncture, chest x-ray, EEG, EMG, the works, every thing came back normal. I was eventually diagnosed as having Myalgic encephalomyelitis, and told there was nothing that could be done other than to learn how to manage the symptoms. I was told there was a good chance I'd get better and was sent to the local CFS/ME service. Unfortunately the docty there didn't think I had CFS/ME, and although I told him about all of the tests I'd had he referred me to the National Hospital for Neurology and Neurosurgery at Queen Square in London. This is where my nightmare began.
The first neurologist I saw initially accused me of wasting his time and doctor shopping, even though I hadn't referred myself. I was eventually admitted to a ward at the National for a week. This was a complete waste of time. I saw a psychiatrist ( I had seen one before who could find no evidence of anxiety disorder or depression) had another lumber puncture, some blood tests. Most of the week there was a waste of time. At the end of the week I was told my illness was psychogenic. I knew it wasn't psychogenic, so I refused to see the psychiatrist. I did relent later, but they wouldn't see me because Oh would have had to have believed my illness was psychological for the treatment to have worked. Added to that, I had just lost my 25 year old son oh no a tragic accident. I was also pointed to Dr Stone's website, which just made me mad. It seemed to me that he was talking about hysteria, but using a different term to get patients to comply.
Much to my relief, I was discharged from the National. I just tried to manage my symptoms as best I could without seeing a doctor. Throughout my illness I have had short remissions. I always thought I had ME, the diagnosis I was originally given.
In 2013 I was getting problems with initiating movement. I mentioned it on a forum and a doctor who specialises in ME said I should get it checked out by a doctor. To cut a long story short, I ended up back at the National! This time they used the more patient sensitive term FND rather than psychogenic, although I knew it meant the same thing. By the way, the National considers ME/CFS to be functional regardless of numerous biological abnormalities that can be found in the condition of the right tests are done.
In July last year I started to get well. At first I thought it was just one of the many remissions I have had over the years. I had been seeing a neuro-physiotherapist, and thought that had helped. I also read a couple of books about neuroplasticity. I continued to improve. I started to believe that maybe FND is real. I thought I'd recovered. I was walking 3 miles or more a day, and managed to do 20 hours volunteering at a charity shop. I was looking at going back to work after 13 years.
But a couple of weeks ago it all came crashing down. My long period of wellness came to an end. It looks now like I just had a long remission. None of the tricks I thought were helping me to maintain my function worked. I am now back to where I was.
I have no intention of going back on the merry-go-round of doctors and neurologists. It is no good doing so as once they decided on a FND diagnosis, that's that. I don't have the money to go to private doctors. If I did it is unlikely that I can be treated and get well. I am pretty much convinced that I have ME.
FND is a diagnosis that virtually guarantees you will never be taken seriously when it comes to your health. Although I'm sure that doctors who promote the diagnosis have the best intentions, I think they are doing great harm to some patients.
Thanks for sharing Paul, what an epic tale of misery at the hands of our so called caring profession.
Another thing about the tragedy of being given this label is, unlike other health support groups there is a lack of healthy, intellectual discussion on it. I miss that.
As if having these bizarre, unaccounted for symptoms wasnt isolating and vague enough, there is nowhere to have supportive and reasonable debate without being shut down by admins. I find that really worrying. You either agree with the diagnosis or you bugger off.
The FB support groups are either full of people playing ping pong with how bad their symptoms are. There is no advice because at all because, let's face it, there is none to give.
It's like a never ending nightmare.
There used to be a lot of rational questioning on this forum and some really great posts, I often wonder what happened to those people.
I’m so very sorry to read about you losing your son Paul. The last thing you needed was then to have your illness belittled or misdiagnosed.
I’m guessing psychogenic illnesses do exist - but not as nearly as commonly as one would think judging by the ever growing numbers being diagnosed with FND.
Just a thought but perhaps doctors should be treating confirmed psychogenic disorders as mental health conditions rather letting neurologists give long discredited Freudian conversion disorders a new spin, trying to fool people made of flesh and blood into viewing ourselves as computers with hardware and software issues?
Purely a hunch - but it also strikes me as being very suspicious that neurologists are diagnosing more and more with FND when Stone et al are receiving a lot of research funding for their work on so-called functional disorders?
I’m under lots of specialists and am slowly turning increasingly numb everywhere due to small fibre neuropathy as part of an autoimmune disease called Sjögren’s. I also have Hashimotos, Trigeminal Neuralgia, degenerative disc disease, and hypermobility disorder.
My latest neurologist has kindly agreed to keep the word functional off her clinical letters in future after I explained that this was not a useful label for me and was potentially harmful. By calling it FND she is taking the neurological symptoms out of the context of a rheumatic disease and placing them alongside primary neurological diseases such as MS - which Sjögren’s often imitates to perfection. But it’s never helpful to have symptoms belonging to a different, systemic disease process viewed only in the context of a neurology bubble.
But still her FND diagnosis lingers on like a bad smell and each specialist I attend now gets a disclaimer from me - which I don’t really need to keep up because I think they are probably as sceptical as I am. It also takes up precious appointment time and means I’m always on the back foot and so are they.
This has caused me so much unnecessary anxiety nonetheless and I know many in the autoimmune boat who have suffered immensely from being similarly disbelieved. We call it white coat PTSD on the Lupus HU.
It also occurs to me that if my neurologist accepts that all my symptoms have an organic explanation then she might also have to agree to put me forward for a very expensive immunoglobulin infusion which would probably be denied on the grounds of cost. She would then lose credibility with her senior colleagues and professional peers. So, young and pleasant as she seems, she almost certainly has an agenda of her own and I think it’s in her interest to put at least some of my symptoms down to FND, and it is in the NHS’s interests of course where the health economics are concerned.
However, bearing in mind that MS, MND, PD and my own autoimmune disease are all basically incurable - I’m never that sure that those of us diagnosed with supposedly rare diseases are much better off than the undiagnosed in real terms. But I still strongly object to this label on principle because I think it’s the outcome of bad medicine and neurologists are simply projecting their own failings onto their patients.
I have just been told my FND diagnosis is to be down graded but as yet I dont know what that means exactly till I get the letter to see what it says...I am fighting the diagnosis on the basis of threat to life...I have severe generalized dystonia and 3 cavernomas in my brain so the symptoms I have firstly bare no resemblance at all to what genuine FND sufferers have and the list of symptoms site again reflects none of my symptoms...I had no assessment done there was a video from an EEG and this was looked at by no more than 5 neurologists and an opinion was formed I was told during my negotiations to get this crap off my records... I am embarrassed to see what others suffer and to be grouped with them makes me feel like such a fake through none of my own doing
more serious than that though is that I was seen at the FND clinic am in the hallway of the waiting area having a lovely chat with a lady and wham...a dystonic event arrives...support from nursing staff and my family member allows for rescue meds to be taken and for me to be moved away from the waiting area into a private space and the lights are dimmed...I am then taken to the room were am to get the eeg and am videoed...now somewhere between the dystonia event happening and me being sat in front of the video camera this event stops being dystonia and becomes FND???
emails have been done back and forth with little impact but then I am taken to the hospital for a respiratory dystonia event which has involved at times...being bagged, intubated, arrest team ,Resus and on one time my family being called in to say goodbye as the arrest team struggled to get the respiratory muscles moving again and basically I was resuscitated....so we are talking serious threat to life here
now I have had 2 emergency trips to the hospital and both were a nightmare bcs I was told that I now dont have dystonia I have FND...I have a cavernoma in the basal ganglia of the brain that is seen on an MRI scan and have been successfully treated for near on 20 plus years for dystonia
My first complaint through the ED was upheld with a red alert against my records indicating there is a laid down care plan and it must be used...nothing much has changed other than I get bullied and then I get the meds I came for.... so I am now tackling the neurology dept and had my call this week
I asked at what point does a dystonic event become FND ...in the hallway supported as a dystonia patient 15 mins later in front of a camera and it becomes FND so clarify when the change over took place and how did this happen...the out come after a long winded explanation that it was an opinion and not a diagnosis and this was agreed by no less than 5 neurologists at the team meeting that this is FND...now am to get this down graded with no explanation of what does down graded actually mean...is it down graded from a diagnosis to an opinion or is it down graded from an opinion to what ???
the out come for my health is the excellent healthcare and management of medical crisis related to dystonia is no longer available to me and on top of that I am for the first time in my life suffering from anxiety and panic attacks and medical PTSD...
So its a case of watch this space...I am very concerned that a Consultant who runs the dystonia clinic failed to recognise or even consider the fact that he was looking at a dystonic event especially as this person has responsibility for my care...so major levels of anxiety is were its at now and I have never felt more unwell or scared in my life...
I've been struggling with FND for 10 years. I was told by my neuropsychiatrist in 2012 that my functional dystonia (psychogenic dystonia at the time) was due to me being single and childless. Needless to say, psychotherapy and psychomeds didn't help. I tried to persuade my neuropsych that it was impossible to figure out the triggers for my dystonia, that the symptoms simply came and went spontaneously, but he refused to listen. Then in Feb 2021, I got infected by Covid, and became a long-hauler. Seeing that many FND symptoms are actually very similar to long-haul, especially in terms of their behaviour, I am convinced that there has to be connection with my FND and a viral infection (at least in my case). The neurologist who is treating me told me that she has also seen similarities between long-haul and FND, and is now of opinion that FND is not psychiatric (yay!) but a neurological issue.
The difficulties we endure in chronic and overwhelming physical symptoms is hard enough. Often the quality of life is extremely affected. Loss of jobs, family that doesn’t believe in the struggle and docs who can’t make heads or tails of it, exasperate the afflicted. Those that have minimal medical support and/or misdiagnosed maladies have compounded suffering.
Personally, I am full convinced I have FND. The extensive testing and rule-out of so many disorders and illnesses has made me certain of my FND diagnosis. I can barely list the number of specialists that focused on one area of my issue.
Thankfully, my general neurologist had a inkling that I may have a movement disorder. She petitioned very hard for me to be evaluated by a top neurologist who works specifically with movement disorders. I am in the USA. Comprehensive medical insurance and close enough proximity to a world renowned hospital have been a blessing.
I cannot imagine tolerating a lack of care and associated therapies.
I consider your viewpoint valid and applaud your tenacity in pursuing every avenue. Prayers 🙏
Hi Henrietta. I'm pleased for you that you have access to good treatment. Have you found that it has helped your actual FND symptoms? If so, can you share which symptoms it helped and what the treatments were? From what I see on message boards and FB groups, and from my own experience, psychological therapies seem to help some people cope with their awful symptoms, but don't do anything to affect the symptoms themselves. So if you know of anything else that works, I would be very interested in hearing about it. Thanks.
I hope today is a good one for you and you find a couple positive thoughts and actions throughout the day.
My diagnosis is new; July 27, 2021.
I have four types of therapy. PT, OT, Speech, and Psychotherapy. I have been going to PT and OT since late August 2021.
PT (2x week) is where I have seen improvements. My balance and Frankenstein walking are so much better. It is a lot of effort to walk reasonably normal but I can do it now as long as I am not too fatigued.
OT (1x week) is focusing on hand dexterity, strengthening hands, and manipulation of objects. In addition, cognition (especially memory and focus) is worked on every session.
Psychotherapy (2xmonth) was started in June 2021. My main foci are communication and expectations of others now that the “old” me has been replaced by an ever evolving “new” me. We have worked on a lot of coping strategies.
Speech therapy (2x week) has just started this month (Oct 2021). . I’ve had two sessions of evaluation and have an upcoming Modified Barium Swallow Test. Foci will be on cognition, talking, swallowing, and voice. No actual work has happened yet.
My awesome neurologist wants me to complete 6 months of therapy before he checks on progress. He said with aggressive therapies, I have a reasonable chance of improvement. This is a slow and arduous process. Be patient. If this doesn’t work, he will discuss other options.
I can update you on effectiveness of each modality in the future. Just remind me in a couple months. I hope this offers some insight.
My daily attitude. Chin up. Day be day (even hour by hour) living. Find positives every day. Do not let FND be my identity. I am much more than that.
FND isn't a Psychiatric condition it's an actual damage to the nervous system and communications system of the brain thant can be imaged on Spect scan. I dont understand why alot if people are so upset with a diagnosis that could potentially explain there ailments and help them seek treatment ? If all the test are negative and you have done your best to seek numerous opinions please except your diagnosis and try to move foward. FND is a real diaslabling illness and if your seeing doctors not versed in it then you wo t get the correct help you need
Your explanation makes sense. I was diagnosed with FND 8yrs ago. Mine isn't as bad as some, disconnection to the left side of body and slow speech. I've lived with chronic pain most of my life, but still manage to function. Neurologist couldn't refer me to clinic as we live in Regional area and I'm my husband's carer. I've never been judged by doctors because of my diagnosis. They just try to work around it. Usually my other medical problems take precedence. I still do research to see how I can improve my symptoms, but don't have access to funds being on aged pension. Take one day at a time. Work with what I have today. I feel for ones who are totally immobile. Still allowed to drive, Neurologist said, you might not be able to walk straight, but you can drive straight, I would never put others lives in danger. Hope others find peace with what you are looking for. Take care. Moni
Toesknees, I think different doctors interpret it in different ways. I'm quite sure there are many out there who will see it as a psychiatric condition.
Your explanation of it sounds perfect. If more doctors truly do interpret it as such I think that's really positive!
I would say it's not up for interpretation it's literally described this way by most knowledgeable neuropsychiatric doctors who are remaining upto date on things and then hand them a brochure on it 😆 Things like Psychiatric conditions and neurological conditions are found in tandem with some FND cases and each paitent requirse there own unique protocol to overcome this illness.
Joanna 36
I fully support you with what you are saying
I was in hospital with stroke like symptoms all clear was told by a neurologist within 20 seconds of seeing me you have FND nothing we can do go home I couldn’t move I seen a junior doctor the day I went sent home he apologised and said we know you haven’t got FND but they need the bed so he said that we can’t say anything
Now it is on my records and every doctor and neurologist I see just don’t listen and just send me home my symptoms have got a 100 times worse one neurologist said yes your walking has got worse but you are 59 what do you expect I have falls every day
I have been kicking of at the doctors and I am seeing one this week he did ring me and said I think you have late onset MS and will be sending me for tests but he said the problem is as you are tarnished with the word FND it will be very hard to get it changed,
He said he is hearing so many cases of FND now it is so they can dismiss you and get you of the list to make it better for them,
He said sorry i am convinced you have MS but you will probably never get treatment for it as the neurologist will never go against another
So my life is getting worse by the day and I am on the scrap heat all thanks to this consultant who wanted my hospital bed I have asked for a lumbar puncture but they have refused due to cost it stinks
Somewhere I. The UK - this is horrific and hideous and I'm just glad someone at least acknowledged your suffering and this utter nonsense with fnd. My friend works in life insurance and asked me about it recently as she said she is seeing a huge increase in applications with this diagnosis. I explained to her that it's the biggest pile of crap going quite frankly.I live on benefits because I have many conditions, luckily all diagnosed yet neurology is still a massive problem. I just paid for a scan called a CTvenogram. It has shown quite alot in terms of vascular problems, jugular veins are squashed and not supplying blood effectively to the head. I've been on hospital so many times and always mention these awful head symptoms. MRI scans have always been normal they say.
It isn't right or fair but the only way you are going to get answers is by paying and going through a tick off excercise of all the things that could be causing this in your case.
I have awful crippling mental health struggles right now, it feels like my brain is starved of blood. Now this scan has shown that. If I said this to Amy neurologist they'd just say fnd because my cognitive functions and mental well being is messed up. It's so wrong and archaic.
I was given this diagnosis two years ago in which i always new it was not right. Saw two private neurologist both said FND. However, i was mildly hypocalcemic which had been missed for many years. My PTH was blood test was taken recently and it came back as normal but ‘inappropriately normal’. If the calcium is low then my PTH levels would have been in high levels. I now have working diagnosis of a rare condition called hypoparathyroidism and under endocrinology. All my FND symptoms were tetany and my neck spasm, movement attacks and balance went very quickly after starting calcium tablets. All my other symptoms are symptoms of low calcium or hypoparathyroidism. You can also be symptomatic in normal range with hypoparathyroidism in which non specialists don’t understand. My calcium levels can fluctuate back and forth probably hourly so if they catch your blood on a good day it will be normal.
I have also just been diagnosed with orthostatic intolerance which explained the knee buckling.
I am also on the waiting list for MCAS as i have various allergies. I have thyroid antibodies and a historically low normal b12.
I have autism and a history if OCD and anxiety and think they used this against me in relation to the fnd diagnosis.
Seeing a nhs neurologist in a few weeks who is looking into this misdiagnosis for me as its been dangerous. A&E once dismissed my tetany as FND was in my notes.
Don’t give up everyone - its hard but you can get there
Ah bless you. You sound like you have a high possibility of having Ehlers Danlos. It is strongly associated with POTS ( orthostatic intolerance issues), MCAS and Autism. I have EDS, POTS,MCAS. I believe very strongly that a high proportion of people with the bizarre symptoms who are told FND have EDS and all these other co morbids.
A doctor did wonder about EDS and I did get referred but I was told I did not meet the whole criteria at that time. But I still do wonder now things are changing.
Not sure of the cause if my hypopara yet which could be autoimmune. They said i was also in a grey area going back a few years in relation to developing an autoimmune condition and sjogrens and scelderma. My ANA was boarderline.
Yes I have Sjogrens. I would have probably been told I didn't have EDS according to the new criteria. The new criteria I believe is really poor. I'd say you will be EDS based on everything else you have. Doesn't always help knowing but can be something in the face of doctors trying to gaslight you.
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How do your walking problems manifest with your fnd?
Were can I find a doctor that does not think fnd is a mental health crisis
FND: The lazy-doc diagnosis...and a travesty for suffering people.
Alternatives to FND diagnosis - maybe helpful???
waste of time
