If you would like to leave a message or discuss posting your own story please complete the form. Many people have told me that they find the feedback and ‘stories’ pages very helpful.
Please note however, that I cannot provide advice to individual patients and I do not have a private practice.– Many thanks, Prof Jon Stone, Consultant Neurologist Edinburgh
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Susie 22nd October 2020. This site was recommended by my GP and has really helped thank you. It’s written in an easily understandable style with no judgement.
Sophia 25th Sep 2020. I am writing to say thank you for all the work you do concerning FND. Following an injury aged 16, I have had a fixed dystonic posture of my elbow, wrist and fingers. From the onset of symptoms, it took quite a few years to get the correct diagnosis. I have just finished the Physio4FMD programme and for the first time in almost 7 years, my elbow has gained 45° from its previously fixed 90° position. In the booklet, there was a link to your neurosymptoms.org website which has been hugely helpful for me and is a wonderful resource for both those who are newly diagnosed and those who have had the diagnosis for a while but perhaps not had much understanding from professionals outside of the field. Thanks again and I look forward to seeing awareness and knowledge of FND continue to grow with further research.
Samantha, 24th Sep 2020.What a wonderful website, thank you! I had symptoms after suffering from cerebellitis caused by a viral infection while pregnant 10 years ago. No one ever mention FND but it makes perfect sense now. I thought I was having relapses due to the functional, speech and cognitive issues. The neurologist and MRI scans revealed nothing and I felt so frustrated/doubted/worried because they couldn’t explain my symptoms. I had hypnotherapy and PSYCH-K after I was ill and this helped resolve these symptoms. I am now a therapist and use these techniques. Some of my clients have FND conditions and PTSD. They are greatly improved by updating and rewriting the software of their subconscious mind. The mind and body are intrinsically connected
Kate, 27th August 2020
I was diagnosed, apparently, with functional cognitive disorder a number of years ago. No one told me this was related to dissociation. In all the times I’ve met with neurologists, neuropsychologists, and now psychiatrist and a psychologist no one ever mentioned it. My GP hasn’t discussed it with me. Or, did they? The problem is I no longer know. Because I forget almost everything. I have always had very little memory of my childhood, family holidays and events, and even both my marriages and my son being born or growing up. Now, they tell me because of the severity of my cognitive problems they are thinking of taking away my driving licence. Sure, I get lost all the time. Yes, I have practically no ability to visualise anything I read, I draw, I see on TV or at the cinema. But technically I have no difficulty with driving. Go figure.. So, the one thing that I can do well is about to be taken away from me. To anyone out there diagnosed with a func tional disorder please ensure you ask all the right questions and get the answers you need along with any relevant therapy. I’ve lost my job, my abilities to learn, and now the only thing I feel that I can still do well is about to be taken away. I wouldn’t wish this condition on anyone.
Nicola 22nd Auguts 2020
After three years of symptoms coming and going and endless tests and trips to the hospital, I have been diagnosed with FND. All along I was told it was most probably nerve damage after being pregnant with my daughter (my symptoms started in my first trimester.) I can accept the diagnosis but the attitude I have faced from the people in charge of my treatment completely lacks knowledge of the condition. How can I be expected to understand my condition if I am pushed from pillar to post because the medical professional treating me doesn’t have enough knowledge to help. I held on for months to see my neurologist who treated me more as a inconvenience than his patient, I had to have my SLT attend due to my struggles with my speech, he then told me with no tact that he can’t help me and it is psychological! I have no previous experiences to warrant this, he wouldn’t listen and stopped my appointment as he had a meeting. I had questions about some symptoms as my OT th inks that I may be having seizures, he just wouldn’t listen to me. My SLT said she thinks that I need to be treated at a centre which treats FND as either an outpatient or in patient. I have gone from possible nerve damage to FND and needing specialist help in a blink of an eye with no explanation. It isn’t stress which has caused this to happen to me, but my experience and treatment is causing stress which feeds my symptoms, so now stuck in a viscous circle. Why in 2020 can attitudes of professionals be like this and lack so much understanding if functional symptoms are commonly seen in neurology! I deserve to be treated with dignity and heard and know wondering whether to cope on my own again rather than having to fight for treatment.
EDITOR: Im aware that many people have really negative and stigmatising interactions with health care professionals in relation to their FND diagnosis. I also agree that one of the commonest sources of stress from people with FND relates to these interactions. FND Hope did some research on this – here. The FND Society (www.fndsociety.org) this website and patient organisations are trying to change that but we have a lot of catching up to do Everyone deserves to be treated with dignity and access to treatment shouldnt be so difficult.
Janet 19th August 2020
I am in my fifties. I have suffered from migraines since I was about 9 years old. Over the years they have become alot worse,to the point where when i have an attack,I lose my speech and the feeling of the left hand side of my body,I experience excruciating pain in my head. I have spasms and get very confused and cannot function properly. After being stuck in Hospital for nearly 3 weeks,I was finely diagnosed as having FND which I had never heard of. But I feel nobody understands what it is like and what I am going through, I feel so alone and isolated from everyone,and that I am not getting the proper help and support that I desperately need,especially from my family.I am scared to go out,just in case I have an attack,I feel so low,does anyone else feel like me? Thank you for taking the time to read this.
EDITOR: It is often a very lonely experience being diagnosed with FND. Im sorry I cant support a forum but you can read about other peoples experience on my stories page, see videos of people describing their own FND symptoms on this videos page find lots of other patients and support through FND patient organisations listed on my links page
Lisa 24th June 2020. My neurologist (and 1 solitary assessment by neuropsychiatrist) concluded that my neck spasms were not organic dystonia (after initially being diagnosed with this for a year). They say to my face, my symptoms can improve or even go away altogether. I am having to self fund psychotherapy and physiotherapy (mixed experiences with physios). I am trying to be positive but am struggling. A particular frustration which feeds into my doubts about diagnosis is that my neuro doesn’t confirm/explain FND in my reports. He just says distraction seems to help symptoms. It feels like my neurologist is reluctant to commit himself in reports, despite his many years experience in a dedicated specialist neurological hospital. I wonder if others have experienced this?
EDITOR: Its quite common for neurologists to consider that someone has FND but not communicate that clearly to a patient. It may also be that they themselves are not sure. DIagnostic uncertainty is common in neurology unfortunately. In a situation where a problem may be be FND there sometimes can be little to lose in physiotherapy designed specifically for FND. I would suggest asking your neurologist to be clearer about whether they are unceratin or whether they are just finding it difficult to communicate a diagnosis of FND to you
Graeme 22nd May 2020. Thank you, from the bottom of my heart for being able to shed light on what has been causing much problem for the last few years. I am so delighted that my consultant has taken me seriously and pointed me to your excellent website. The enlightenment found there has been profound and I simply can’t thank you enough. I see hope that I will be able to walk properly, after years of declining walking ability, and even trying a few of the suggestions I have read have begun to make a massive difference.
Douglas 24th March 2020. A close friend was diagnosed yesterday with FND after two years of being shunted between a wide variety of health professionals, most of them (though not all) sympathetic, helpful, understanding and eager to find an explanation. This has been a very worrying time. Reading through this web site after receiving the diagnosis was tremendously useful. As you describe the condition in one place: it’s a real condition but not a disease. This helps us to understand, and also helps us to understand how the condition has fallen between the cracks of the medical establishment during this time. Many thanks for making this information available and understandable.
Helen, 19th February 2020. Thank you so much for the information on this website. I got a diagnoses yesterday and I am still processing things, my consultant gave me this website and I am so glad he did. Once again thank you. Helen
Cliff, 10th February 2020. On Christmas eve I without any warning collapsed, it I was rushed into hospital with a suspected stroke. Over the last month or so it happened again three times and yet the hospital despite near on every known test one could have could find nothing wrong but then they told me I have FND and was told by the hospital about your website. I can only thank you from the bottom of my heart for all the information on your website yes I thought I was losing it, yes I could not understand what was happening to me. Everything you said is so right hopefully now I can start to get the proper help to get better thanks to you. God bless you. Cliff
Donna 3rd January 2020. After 7 years of the wrong diagnosis and 7 different doctors, I went to one centre and they diagnosed FND, refered me to another doctor in Denver. I am on Propranalol and had several months of PT. I am doing SO much better! The truncal tremors I have had for 7 years (sometimes violent) are now a perhaps twice a month occurance and no violent ones! I have been glad to read these posts and to see what others are doing for their success! Sometimes I can relax and breathe away the small tremors–I have also found that if I am singing and have a tremor if I tap my foot to the music the tremor will subside! Thank You for the posts!
LSE 2nd December 2019. My neurologist thinks my dystonia may be functional or both functional/organic. An EMG did show increased electrical activity in neck muscles but I understand this is not a definitive way of diagnosing dystonia. He says that my clinical presentation of cervical dystonia is unusual. I have no improvement following botox or meds. My neurologist is glad I’ve found this website and I thought that understanding FND and that it is potentially reversible might get me on the path to recovery or improvement. Why then do I feel worse and feel that it is spreading to my face and I’m experiencing facial tightness/numbness?! I have been seeing a psychotherapist, tried hypnosis, forced myself out more. But it feels like FND is fighting back! I wish it would loosen its hold. I just want to get back into work. The success stories are great to read. Maybe one day I can post mine.
EDITOR: It is certainly not unusual to have a mixture of FND and another neurological condition. you are correct that EMG isnt that helpful in this situation. Although FND is potentially reversible it can also worsen over time. Uncertainties about co-existing neurological conditions dont help so worth trying to clarify that. That unpredictability is really hard for those suffering from it. I wish you all the best with your treatement.
Joanne 2nd October 2019. I have a question in regards to the recent studies involving fibromyalgia and the presence of small fibre polyneuropathy in up to 50 percent of sufferers. As fibromyalgia is a very common symptom of fnd and was thought to be a functional disorder and as small fibre polyneuropathy is only now being recognized as a major cause of pain, sensory and sometimes auto symptoms like bowel issues, pelvic pain, heart and blood vessel issues ect my question is this: how can a neurologist tell the difference between fibromyalgia/functional symptoms and small fibre issues without testing for small fibre damage by skin biopsy/auto function/nerve biopsy? The reason I ask is because both fibromyalgia and small fibre polyneuropathy have very similar symptoms and multiple areas that are effected.both don’t show up on mri’s or reflex tests,normal nerve conduction tests or blood work. Both are treated in similar ways with similar drugs yet both have a big difference! One is a neurological ‘peripherral neuropathy’ diagnosis, the other a ‘functional’ diagnosis. If someone presents with multiple symptoms of pain, burning, sensory skin issues, dryness , bladder and bowel,Raynaud’s type symptoms ect how can one be confident the issue is indeed functional rather than structural?
EDITOR: The studies of small fibre density in fibromyalgia are interesting and an important line of research but there are still many more questions than answers in this area. For example, could pain itself or medication influence small fibre density. If small fibre neuropathy is important in fibromyalgia then a further question is how that influences treatment or whether it improves with treatment. This site is primarily about FND which does not include fibromyalgia and focuses primarily on movement and seizure like symptoms. Fibromyalgia is a characteritsic clinical syndrome with diagnostic criteria. Researchers in FND and Fibromyalgia agree on the importance of recognising that these are nervous system disorders, with many studies also showing changes in the brain but much to be worked out. FND has specific signs which help identify that the brain is involved (eg Hoover sign) and do fit with a ‘software’ issue because the weakness or tremor changes depending on the task being perfomed. I agree that if a patient does not have motor symptoms then it can be harder to know and doctors should balance a willingness to be uncertain, but not be so uncertain in everyone that they never try to help where they can
Philip 3rd October 2019.Thank you for the informative website. My partner initially presented at neurology in march with a multitude of symptoms that weren’t going but getting worse. These symptoms varied from, Inflammation of the optic nerve, numbness in the face/hands and feet, pins and needles sensations in various parts of her body, burning sensations and freezing sensations, dizzy spells, loss of balance, fatigue and loss of bladder. The neuro saw her mentioned MS as a concern then ordered a head and c-spine, non weighted. The results cam back clear she was discharged. The symptoms all went inside 48 hours or so at the end of April, but she was having symptom flares before each cycle, her legs mostly, balance and increased fatigue, she still has these every month and it has changed her cycle. In july she started experiencing issues with the hot weather, dizziness, nausea and double vision. Her legs she couldn’t lift either but that went when the weather cooled and after a hot bath or shower she again would be dizzy, nauseious with double vision. With much arguments she ended up back to neurology again. The neuro saw her she explained for 2 months shes been numb in the left arm, her face, down her legs, has buzzing vibrating sensations, twitching of muscles under her skin 100s a day some to the point of severe pain, sensations of bugs crawling on her face and feet, issues urinating despite urgency and a tight band round her chest that felt like a belt, but no pain just uncomfortable and nothing else note able or new. He said the head mri was clear so therefore wasn’t MS. There is other tests available but felt wasn’t needed in her case. Shes to hyper sensitive to her sensory symptoms and needs to dial it down and she will be better and FND was the cause due to her sensory symptoms. She mentioned horrific memory, muddeling and forgetting words. He said it was normal due to fatigue and sensory symptoms as she had a “software malfunction”. She asked again if he believed FND he said yes and gave her your website and discharged her again. My question is can FND be diagnosed based on one diagnostic test being clear? Should he have examined her in the under ten minute second consultation and offered these other tests available? She isn’t happy with the diagnosis due to not being allowed any more tests and feels very let down, ignored and disregarded and as though shes controlling her symptoms. She also doesn’t feel its right to be given a website then sent away to manage and cope with these with zero support.
EDITOR: FND should not be diagnosed on the basis of normal investigations. There should be positive features on assessment, or a typical history – much like neurologists identify migraine without abnormalities on scans. I know that many people experience frustration and disappointment with consultations. I also agree that for most people with FND its not enough just to be given a website with no further treatment. I cant comment on your partners diagnosis or treatment but I hope she finds a way to improve
Mike 7th September 2019. Wondering about the line on the Welcome page as it reads -“not due to damage or structural disease of the nervous system”. Could not trauma to the head such as happens in contact sports eventually, perhaps many years latter, result in symptoms which may not show up on neuroimaging and therefore be called functional neurological symptoms? In this case one would assume some sort of damage has been done although not showing on a scan. Thanks.
EDITOR: Thanks for your query. FND should not be diagnosed just because a scan is normal. It is diagnosed on the basis of positive features, mainly on examination, which are typical for FND and indicate that the neurological symptoms have the potential for reversibility. FND can co-exist with any neurological condition including brain injury/head trauma. Some individuals develop FND after experiencing symptoms directly from brain injury or concussion. This is discussed further on this page. So FND can be triggered by trauma to the brain but, when present, is still a software problem.
Evelyn, 29th August 2019
I had falls facial numbness tiredness weakness of limbs depression and more on your list i am so glad my doctor asked me to look up your website . i had an mri that found small blood vessel disease, my gp’s have been really good sending me for all sorts of tests i have tried to modify my lifestyle to accommodate my symptoms, but i felt i was not being believed by work (friends) but having read this i realise there must be more people around that have similar symptoms. thank you for this information .
Geoff, 14th August 2019
I am a newcomer to NFD, but the stories here have already helped immensely. Firstly it is a great release to realise you are not somehow being stupid ( or something) , and there are actually things you can do. And somehow it is therapeutic to tell this story in brief. I went to the best four hospitals in our town and all the doctors shook their head and simply said they had no idea what the problem was but they would not let me down – they would find the cause! After a couple of weeks of intensive tests, including many MRI’s, CT Scans, Lumber punctures, blood tests, EEG’s, sleep tests etc.then start again and redo ALL the tests, they all sent me home and said I would get over it, but they had checked all the important things like brain tumors, cancer, so there was nothing to worry about! When the physician cant solve the issue they send you to the neurologist and when they cant find the problem, they say you need a Psychiatrist and they say you should take medication even though they cant find anything wrong with you. It started three months ago in hospital being treated for diverticulitis, and while in hospital had a seizure and came out of it with no memory of anything, including who my wife was, but after she sat and held my hand ( I thought she was quite nice ) for a few hours, my memory started to come back and so I was ‘cured’. Unfortunately I began to get more attacks, multiple times each day and sometimes lasting many hours and many times the nurses hadn’t seen this and called emergency teams ( code blue ) about ten times in three months. I had these attacks having breakfast, in bed, in the waiting room for a heart checkup, in the waiting room for an MRI, and a CT Scan reception area, during the day and during the night and many more. The most interesting was in the shower at the hospital, but lets not get sidetracked. I was in hospital and after many attacks I got weaker and weaker until I couldn’t walk without help or shower or go to the toilet unsupervised. Somehow I still felt this was my fault and I was just imposing on people unnecessarily. I have owned and run a medium sized business most of my life with offices in multiple cities and I am not an incapable person and had a very good upbringing so surely I thought I could snap out of it somehow. Over the months my symptoms changed from a seizure, blacking out with no memory of anything afterwards, to being in a non responsive state ( that got the code blue’s) and/ or body shaking like you were being hit with an electric shock. Finally after having an attack at home in bed for some hours my wife called 000 and when I was admitted to emergency a neurologist looked at me and said ‘you have NFD’ and she handed me paperwork to explain it. I could not believe that so many experts had blank looks then suddenly find someone who hit the nail on the head. I was so relieved. She said that one third of her work was for NFD, which begs the question of why so many don’t know about it. Just knowing the cause has helped immensely, and the methods to defer and shorten the seizures is already working. Thanks for this website
EDITOR – Thanks, really glad if its helped. PS FND not NFD!
Jodi, 13th August 2019
Wow! I just want to drop in and say thank you to all of those who have contributed to this website and education materials. As neurologic physical therapist, I am seeing so many people with FMD and other functional overlays and I find myself coming back to your website almost daily and I keep finding more and more content. Keep up the good work! I would love to get involved with clinical research, development of education programs, and/or creating treatment materials. Thank you again.
MM, 13th August 2019
Why do medical dictionaries constantly claim FND/functional overlay is the new name for conversion disorder, I really do not believe the medical community believe FND/functional overlay is anything but conversion disorder, of which they treat with disdain, people are suffering and receiving poor outcomes. In the medical dictionary it claims ‘functional overlay’ is an overreaction to an illness, an emotional aspect, conversion. https://medical-dictionary.thefreedictionary.com/functional+overlay functional overlay Also found in: Dictionary, Thesaurus, Legal, Encyclopedia. functional overlay an emotional aspect of an organic disease. It may occur as an overreaction to an illness and is characterized by symptoms that continue long after clinical signs of the disease have ended. Mosby’s Medical Dictionary, 9th edition. © 2009, Elsevier. functional overlay The emotional response to physical illness. It may take the form of a conversion reaction, affective overreaction, prolonged symptoms of physical illness after signs of the illness have subsided, or combinations of these. Functional overlay may appear to be the primary disease; skill may be required to determine the actual cause of illness. See also: overlay Medical Dictionary, © 2009 Farlex and Partners
EDITOR: These dictionaries are wrong. They are basing these statements on outmoded ideas that FND is a purely psychological problem. Read more on the page ‘Not in the mind‘. Not just me saying this, but all the researchers in the FND community. For example see this article in JAMA neurology with an international authorship
Andreas, 9th August 2019
Hi my name is Andreas, I’m 60 now. Since i was 30 I’ve seen dozens of docs neros psycs orthos gps and more. never in all that time was I either believed, or diagnosed with anything! the common answer was here take this script and you should feel better .Until yesterday, when my new GP says, I think you have fnd!!! I say what? he says here read this !.So get this guys ! After reading his fnd A patient’s Guide, I SEE nearly ALL of my symptoms on display as plain as day.And the best thing MY GP has not only heard of this fnd But he said to me I’m positive you are not making this up!!Well God Bless small town GPS.So the moral of this IS, if you are suffering, someone will have an answer, and that helps more than i can say!! THANK YOU ALL FOR YOUR WORK! With thanks Andreas
John, 9th August 2019
I’ve had 24 years of being told it’s all in my head and the neurologists don’t want to see what happens to me having made their minds up before I’ve entered the room. I have a formal diagnosis of Ankylosing Spondylitis, totally stiff spine and with exercise now balance and coordination issues and a diagnosis of F.N.D since 2018. No consideration is given to the mechanics of anatomy- circulation issues or a stretched spine as in tethered cord syndrome (directly or indirectly tethered) from my lumbar spine. It is not apparent on my MRI.but the incidental findings are ignored. It originates on one side of my lumbar spine but directly changes my walking ability in both legs when moved or held in a fixed position yet it is only my right leg that sets all my symptoms off. There are other mechanical reasons for the spinal cord to be stretched without having an obvious cause all of which can give numerous deficiencies. Likewise with my upper body, changes in body position give me what they call is a movement disorder but it is vascular in origin and is from my chest. I can bring on the symptoms by physically moving this area and then I can’t lift with either hand independently. The way neurological testing is done sat propped up on a couch is hiding reflex anomalies that would otherwise be shown if they could be done stood up. My reflexes become normal when sat and I know why. Yes I can touch my toes but I can;t rotate my spine and that is were my symptoms originate from. There is too much reliance on MRI scans that are not 100% accurate depending on scan slice thickness etc and can’t show everything or the true position of the brain within the scull because patients lie down. A negative MRI is not a reason for a diagnosis of F.N.D in the absence of anything else. Please consider the 4% of people wrongly diagnosed. Perhaps more research should be done looking into all the other possibilities for F.N.D other than being neurological in origin and then it wouldn’t be F.N.D. To Prof Jon Snow, I’m willing to talk about these issues because that is the only way the medical profession will learn that unexplained symptoms do not have to have a neurological cause. I learnt what happens with me, 23 years to understand why and it’s not F.N.D but I’m labelled as such. For those people with weird symptoms look at what causes them, learnt what action brings on the symptom and then try and change what you do.
EDITOR. The issue of misdiagnosis is covered on this page. I completely agree that ‘a negative MRI is not a reason for a diagnosis of FND in the absence of anything else. Any health professional making the diagnosis that way is doing it wrong. The diagnosis of FND should be based on positive evidence of clinical signs such as Hoover s sign or a tremor entrainment test that positively indicate there is a ‘software’ problems in the nervous system. FND is NOT a diagnosis of exclusion. This is how FND can be diagnosed in people who also have neurologcial diseases like multiple sclerosis. It is clearly a major problem if someone is told they have FND when they dont have it or have another condition. But its also a major problem if FND is not recognised, especially now that we have increasing evidence of treatment that may help.
Alex, 7th August 2019
Living on the edge of known science can be tricky. I used to be angry with my brain, but now I accept it is trying its best in a difficult situation. After a head injury (my first seizures were witnessed by neurologists ) I was diagnosed with epilepsy for 10 years (and offered surgery). I lost my career twice in 4 years because of the seizures and amnesia. After being diagnosed with PNES I was left to find my own treatment because the relevant treatment wouldn’t be available on the NHS for the foreseeable future, all I was sure of at that point was that at least one person has got something catastrophically wrong and now I had to sort it out. Due to financial restrictions (benefits) I had little choice but to sell my house In a desperate attempt to access treatment regularly this has lead to the breakdown of my family. 15 years after diagnosis and I’m only now able to find the appropriate information regarding my illness(s). I thought that I wa s just unlucky to be treated poorly by the general medical professionals I encountered, however, it seems to be the norm. The reason behind this phenomenon in medical bias is still a bit of a mystery to us all, and it really makes things unnecessarily unpleasant for us. Having seizures every day makes it impossible for me to work and so the benefits system that requires input from medical professionals is made impossible because of the refusal of GP’s to believe that ‘pseudo’ doesn’t mean ‘fake’. Many of these things aren’t being addressed by the relevant people, so we tend to feel abandoned by modern medicine especially after diagnosis. I’m very grateful for this website, it’s a great resource and well thought out, I hope that other sources of information will adapt your model. Alex
Lesley, 2nd August 2019
hankyou so so so much for this information. After waiting 10 months for tests to be concluded I know I do not have any neurological disease, but by God I’ve had and still have the symptoms although they are milder now. My neurologist put me in touch with your website and I’m so happy he did as it explains a lot for me. I did have a concrete neurological sign last July with flashing lights and a swollen optic nerve was detected on examination but there has been no other positive tests which I am very happy about but also left me feeling very confused. Your website has alleviated that confusion so thankyou once again, Lesley
Sarah Vernon-Scott, 20th July 2019
Dear Dr. Stone, I wanted to reach out and thank you for this incredibly helpful website! I am a clinical psychologist working in a neurology department of a teaching hospital. I see many patients who present with functional symptoms. It is challenging to direct them to information and resources that are scientifically accurate and supportive at the same time. Your website strikes an excellent balance in this regard. Many of my patients have benefited from the information you present here. For a short time I could not access the website and worried that it had been taken down. I was so disappointed to lose this resource! Now that I can access it again, and resume recommending it to patients, I wanted to be sure to let you know of the value of your work. Sincerely, Sarah Vernon-Scott, Ph.D., C.Psych. Clinical Psychologist London Health Sciences London, Ontario, Canada
Maria, 20th July 2019
My sister was diagnosed with FND some years ago. Her symptoms where dizziness, temporary vision loss, tinnitus, numbness in the limbs and facial weakness and sometimes difficulty speaking. She was tested for many things but they came up with zilch. What she wasn’t tested for was vasculitis or conditions that mimic vasculitis even though these very symptoms point towards it being a vessel disorder. After her FND diagnosis she was always told that her symptoms where part and parcel of FND. Even when she was rushed into hospital with a suspected heart attack she was told it was likely part and parcel of her FND. Her ECG (she had two, one in the ambulance and one in the emergency room) showed up negative. Whilst waiting for her bloods (cardiac markers) test to come back, she had a cardiac arrest. She was fortunately revived. Her diagnosis was ‘Spontaneous coronary artery dissection’ (SCAD) and further investigations showed she has fibromuscular dysplasia, something she had, up until that point, never been treated for and the culprit that caused an artery in her heart to dissect. All of her previous symptoms where that of FD and yet they can’t or won’t remove this diagnosis of FND.
EDITOR: Any misdiagnosis is awful for the person involved and Im sorry to hear this story. Studies of misdiagnosis show that doctors make a wrong diagnosis of FND no more often than they make a diagnosis of another neurological condition when the diagnosis should have been FND. In that situation patients miss out on FND treatment that might help them. It is also really common to have FND AND another neurological diagnosis. FND is NOT a diagnosis of exclusion. It should be diagnosed on the basis of typical positive features of FND. Doctors diagnosing FND should alsways ask themselves whether the patient may have an additional diagnosis.
Jasmine 12th July 2019
Hi, I have been referring to your site repeatedly since diagnosis in Oct 2018. So thank you for your hard work. My question is about statistics. Can you give a general idea about prognosis. If symptoms keep returning more frequently, is this likely to continue? If the symptoms increase in type, will this also continue? Especially without treatment being offered. Can you have symptoms separated by several years? What is the outlook if they come back along with more recent symptoms? I know this is a lot of questions, but I really don’t have anyone knowledgeable to ask. I know you cannot comment on individual cases, I just wondered if you could provide a general idea of trends you have noticed. Thanks, Jasmine
EDITOR: Our research group has looked at this in detail, click here, gathering together all the studies on FND. The bottom line is that FND is really unpredictable. It can go on for days, weeks, months or years. We meet people with symptom for years who improve and those who we think will do well but find it hard to benefit from treatment. Relapsing patterns are quite common. Some themes emerge from the studies. Its helpful for patients to feel confident about what they have and not stuck in diagnostic limbo, and this is the responsibility of healthcare professionals to provide that explanation and confidence. Treatment from a health professional who understands FND, short delays from onset to diagnosis also help. But no one should have hope taken away, however long they have it, but conversely and no one should be told ‘dont worry about it, it will go away’ either. Its a bit like asking – what happens to people who have a migraine or asthma attack – some people carry on getting them, others dont.
David 10th July 2019
This diagnosis and this site only serve as a message to the world about how little we know about the human brain. My daughter was just diagnosed with FND, after tens of thousands of dollars of tests and hospital stays we get “*shrug* We don’t know, how about FND? This is just your life now, go away and deal with it.” It’s the worst feeling in the world to have been working on getting a diagnosis for so long, and then to just be told “I guess you’ll just have seizures several times a week forever, because we don’t understand what’s wrong with you and we certainly don’t have any medicine or therapy to treat it.”
EDITOR: Im sorry to hear that you and your daughter have had a bad experience. I know this happens a lot.
FND is NOT a diagnosis of exclusion. Any doctor who diagnoses it that way or uses the term as a ‘dustbin’ for when they cant figure out what is wrong doesnt understand it. It has characteristic positive featuresw which are explained on this site and in the accompanying articles on the downloads page. There is also plenty of research to make us optimistic that various kinds of treatment, especially physiotherapy for functional movement disorders and psychological therapy for dissociative/functional seizures can be effective for many patients. If your own medical team think there is no treatment for FND ask to be referred to a team that knows what the treatment is.
Michelle 7th July 2019
I was given your website as my self help guide to FND after being diagnosed with it by my GP in a 10minute appointment. I had one neurology appointment and one MRI where only MS was said and no follow up. Due to that my GP says this is what I have as I went to see him due to heat sensitivity where I was having symptom flares. I have found your website very helpful and informative and also realised I only have 3 symptoms in the list, considering I don’t have NEAD, only have fatigue and dizzy spells and pins and needles with numbness in my face, feet travelling up my body and my hands going up my arms. These sensations do spread and get worse. I do know misdiagnosis us very low and usually only happens when a non neurologist makes the diagnosis. I also know that it shouldn’t be diagnosed based on one negative test and is a complex disorder which requires multiple specialist and not just a reference to a website for self help and you’ll be better in a matter of weeks. Thank you for this website and all the information provided it’s clearly a resource for many to fully understand the condition they have been diagnosed with.
EDITOR: Michelle you are absolutely right that FND is not a diagnosis of exclusion, and that treatment should not just be about being told to read a website. Information is an important part of treatment in its own right but health professionals should not expect that information alone will make people better or be a substitute for clinical follow up and referral for treatment.
Diane 28th June 2019
What a great website! I suffer from fibromyalgia. I have had 6 episodes of losing feelings in my legs over 6 years. I was finally diagnosed with FND this month. It’s great to see someone taking time to look into this disorder and do research. All the times I was admitted to hospital I was told it was all in my head.
Paula-Anne 27th June 2019
Thank goodness for this site. I thought I was going crazy and people did not believe that my symptoms could be numerous and all at the same time. or some of the time and affect my body in different ways…they thought I was making it up! I am finding it difficult to cope with not having the full use of my legs, having paralysis on some days, not being able to see because of the double vision and the excruciating bone and joint pain amongst other symptoms. I felt relieved when I was directed to this site and saw the multiple issues that were affecting my body were real. There is a long slog ahead as I learn to deal with my situation but I am trying my best to be positive and look to the people/ things that give me happiness, comfort and support.
Soosan, 22nd June 2019
Almost 2 yrs ago I passed out for an unknown reason. On my way down I suffered a major concussion, and have ended up with post concussive syndrome. I started having language issues, headaches, vision trouble, tremors in my right hand immediately after hitting my head. About a year after the doctor started saying things like, “that shouldn’t be effecting you anymore, saying I was just depressed. I thought an appointment had been made with a neurologist, but was sent to neuropsych. Neuropsych proceeded to give me an IQ test and told me my hand twitching was from depression, for $1930 out of pocket. I feel taken advantage of by that doctor, I don’t think clearly, I forget a lot, and I discussed all of my symptoms with her and the fact that it all started on a specific date. Today I saw a neurologist. Thank God! He gave me your website and everything fits and makes sense, and now I can get the therapies I need to hopefully get feeling better. Thanks, it does f eel really good to know I’m not just a wacko.
H – a 16 year old girl, June 2019
This website has been really beneficial in helping me to understand what is going on as well as helping other people to understand my condition. I am a 16 year old girl who has never had ANY health problems prior to this. A few months ago i began suffering from migraines, which was extremely unusual for me. In the evening of the second day of my migraines I began to have extremely violent seizure-like attacks. My body would jerk extremely violently, my head would throb causing me to scream with pain, I would have difficulty breathing and i would get pain in my chest. The strange thing about these attacks was that, unlike typical seizures or stories on this page, I was fully alert and awake when these attacks would happen to me, I could feel it happening and would remember it afterwards. These attacks would go on for hours at a time, the longest being around 8 hours (ranging in how violent they were) and there was no apparent trigger or warning before this happened. The attacks would exhaust my body and left me feeling extremely unwell afterwards, the migraines and throbbing in my head was consistent even when the attacks weren’t happening. The attacks were quite disturbing to witness and no one had ever seen anything like it. That first night I was rushed to hospital via ambulance. I confused the staff there as no one had seen anything like this before.In the end the hospital began treating me for meningitis and I was moved to an infectious diseases ward. In total i spent 2 and a half weeks in hospital and during this time my attacks continued. In the end a Lumbar Puncture revealed that i didn’t have meningitis and my treatment was stopped. I was referred to a neurologist, they put me through several tests including an MRI, an EEG and a sleep-deprived EEG. All of these came back pretty much normal apart from some minor abnormalities, but not enough to actually diagnose me. This neurologist suspected that my attacks were simply down to stress as I am a high-achiever, yet personally I didn’t feel that this was the case. I was then referred to a second neurologist who labelled my condition as dissociative attacks and suggested that I look on this website. My attacks are ongoing, yet they are less frequent then when they first began (I am currently on medication, which could be contributing). I thought I’d share my story because this site didn’t really have any experiences of young people with these symptoms. I hope this helps someone who need it. Just remember to stay positive throughout everything and have faith in yourself even when it feels like no one believes you or is taking you seriously.
Sarah 3rd June 2019
Thank you for an enlightening website and also for making the website freely available. It is rare these days to find expert information provided free of charge purely to help others..
Catherine 21st April 2019
In early 2014, after coming back to work after three months’ sick leave for burnout syndrome caused by extreme stress and harassment at the work place, I started having blackouts. They were short (lasting 1-2 minutes on average) and sometimes only noticeable to those who knew me well. To others, they could seem like I was simply lost in thought. At first, my GP assumed they were caused by stress and put me on an anti-depressant drug (Cipralex). I did not notice much improvement on it so it was discontinued after a few months. When I continued to have blackouts after a year, I was referred to a neurologist who ordered lots of tests – EEG, sleep-EEG, CAT scan, and MRI. All came back normal. But, when the blackouts continued, and came more and more often, to the point of affecting my ability to do my work, the neurologist put me on Keppra on a trial basis. The dose was slowly raised over the next few months. I tolerated it well, but noticed no improvement whatsoever. The neurologist then referred me to a colleague specialising in epilepsy. My new doctor repeated all the tests and also added a PET scan which also came back normal. It was then decided to put me on Lamictal which has proven effective in many cases of “epilepsy of unknown origin” (according to my new doctor). However, now things started to go really wrong. Lamictal turned out to have horrible side effects once I reached the maintenance dose. At one point, I started hallucinating, wandering around not knowing who or where I was. The neurologist claimed he had never heard of such side effects and doubted they were caused by Lamictal. However, he decided to switch me to Vimpat (Lacosamid) which, according to him, is a “more gentle” form of anti-epileptic drug. Not only did the blackouts continue, but also intensified, both in frequency and seriousness. I started hallucinating more and more often, would often ask others where I was and what I was doing there. It was finally decided I would be hospitalised for further exams. I spent a week in hospital and during that time I had daily EEGs, new MRIs, as well as cognitive tests carried out by psychologists. They all came back normal. But, in the end, it was decided I should be switched to a fourth anti-epileptic drug – Trileptal. It was around this time my symptoms changed. I had just been put on temporary invalidity and hated it. I had already been on sick leave for over a year and wanted desperately to go back to work (the situation at work having changed with the departure of my former boss). The decision to put me on invalidity was really disappointing to me, along with the frustration of not improving despite all the doctors, exams, and drugs. I also knew that if my symptoms did not improve during the year on invalidity (which is really like being on probation), I risked being put on permanent invalidity in my 40s. At this point, I had lost faith in doctors who finally had declared that I suffered from “therapy-resistant epilepsy of unknown origin”. I was told surgery is sometimes an option in these cases but, since they could not find anything wrong with me, they would have nothing to operate on. In recent months, while on Trileptal, I have started having a completely new type of seizures (the blackouts seem to have stopped for good). Three times in recent months, I have had violent cramps, each seizure lasting 20-40 minutes. One time, it happened in my sleep and I fell out of bed onto the floor. My family panicked and called an ambulance. I was rushed to hospital where a CT was performed but it turned out normal. So I was told to get in touch with my neurologist for further treatment. He suggested raising the Trileptal. I chose not to, because the side effects have always occurred after raising the daily dosage above the starting dose. And I felt fine for the next few months. Only to have a new seizure, this time while having lunch with friends in a café. All of a sudden, the person sitting opposite me told me afterwards, my facial expression froze, I got this strange look in my eyes and then started shaking from head to toe. The friend sitting next to me put her arm around me to keep me on my chair. It took about 40 minutes before I “regained consciousness” and realised where I was. I have never had any recollection of what happens during these attacks, and I never feel anything before they happen (this is true both for the blackouts and the violent spasms). I then felt I had to take drastic measures myself because all doctors would do would be prescribing new tests and drugs. I had read that, after two normal EEGs and two anti-epileptic drugs proving ineffective, PNES should be suspected. I had read about psychogenic non-epileptic seizures and decided to find a therapist specialized in trauma counseling. I was lucky to find one nearby and started treatment. The therapist concluded I suffered from PTSD (after scoring extremely high on the tests/diagnostic tools) and recommended eye movement therapy (EMDR) which has proven highly effective in the treatment of PTSD. She also said my seizures sounded like dissociative cramps. I have started EMDR therapy, and it seems to be working…! I have managed to wean off the latest anti-epileptic drug without any ill effects whatsoever. So far, I remain symptom-free, for the first time in five years, without drugs. It’s a very liberating feeling…I can only hope this will last, and that the doctors will agree to reconsider their diagnosis. It is very frustrating displaying all of those symptoms without doctors being able to correctly diagnose and treat them. I have been told I am a “difficult case”, but no doctor has seemed willing to think outside the box and consider an alternative diagnosis. It’s like they decided from the very beginning that I suffered from epilepsy, and they kept prescribing new drugs when the one I was taking did not help. I am very happy and relieved to have come this far, but a lot of work still lies ahead. However, it’s easier to accept that now that I have found a health care professional who listened to what I had to say, took me seriously, and suggested treatment that actually seems to work – unlike all the anti-epileptic drugs.
Louise 15th March 2019
I have been told by a doctor about a “functional block” between brain and body and directed to this website, but cannot find any information about it. This is in relation to episodes similar to dissociative seizures, but with clear awareness throughout but an inability to respond eg total body limpness, breathing stops. Brain is saying to breathe, open eyes, squeeze hand, but body does not respond. Preceded by chest pain, racing heart, bowel response. I can’t find any symptoms like this on this site, there is no dissociation at all with the episodes.
REPLY. I cant provide help on diagnoses for individuals, sorry. In general terms dissociative attacks/seizures and panic attacks are different, although share similar mechanisms in the brain. Many people with dissociative attacks dont experience any dissociation, although ‘body does not respond’ may in fact be depersonalisation. There are attacks which can have features of panic attacks like fast breathing, chest pain etc but in which people dont experience fear (so called ‘panic without panic’). There are also dissociative attacks where people have no warning and experience no symptoms of panic attack at all. What they all have in common is that somewhere in the brain there is a ‘red alert’ going off which the brain and body is trying to deal with in various ways. Typically there is no particular reason for it at that moment, ie the person isnt necessarily stressed when it starts, but the attack itself is stressful. More information on these pages (1 and 2 ) about attack treatment.Lamictal turned out to have horrible side effects once I reached the maintenance dose. At one point, I started hallucinating, wandering around not knowing who or where I was. The neurologist claimed he had never heard of such side effects and doubted they were caused by Lamictal. However, he decided to switch me to Vimpat (Lacosamid) which, according to him, is a “more gentle” form of anti-epileptic drug. Not only did the blackouts continue, but also intensified, both in frequency and seriousness. I started hallucinating more and more often, would often ask others where I was and what I was doing there. It was finally decided I would be hospitalised for further exams. I spent a week in hospital and during that time I had daily EEGs, new MRIs, as well as cognitive tests carried out by psychologists. They all came back normal. But, in the end, it was decided I should be switched to a fourth anti-epileptic drug – Trileptal. It was around this time my symptoms changed. I had just been put on temporary invalidity and hated it. I had already been on sick leave for over a year and wanted desperately to go back to work (the situation at work having changed with the departure of my former boss). The decision to put me on invalidity was really disappointing to me, along with the frustration of not improving despite all the doctors, exams, and drugs. I also knew that if my symptoms did not improve during the year on invalidity (which is really like being on probation), I risked being put on permanent invalidity in my 40s. At this point, I had lost faith in doctors who finally had declared that I suffered from “therapy-resistant epilepsy of unknown origin”. I was told surgery is sometimes an option in these cases but, since they could not find anything wrong with me, they would have nothing to operate on. In recent months, while on Trileptal, I have started having a completely new type of seizures (the blackouts seem to have stopped for good). Three times in recent months, I have had violent cramps, each seizure lasting 20-40 minutes. One time, it happened in my sleep and I fell out of bed onto the floor. My family panicked and called an ambulance. I was rushed to hospital where a CT was performed but it turned out normal. So I was told to get in touch with my neurologist for further treatment. He suggested raising the Trileptal. I chose not to, because the side effects have always occurred after raising the daily dosage above the starting dose. And I felt fine for the next few months. Only to have a new seizure, this time while having lunch with friends in a café. All of a sudden, the person sitting opposite me told me afterwards, my facial expression froze, I got this strange look in my eyes and then started shaking from head to toe. The friend sitting next to me put her arm around me to keep me on my chair. It took about 40 minutes before I “regained consciousness” and realised where I was. I have never had any recollection of what happens during these attacks, and I never feel anything before they happen (this is true both for the blackouts and the violent spasms). I then felt I had to take drastic measures myself because all doctors would do would be prescribing new tests and drugs. I had read that, after two normal EEGs and two anti-epileptic drugs proving ineffective, PNES should be suspected. I had read about psychogenic non-epileptic seizures and decided to find a therapist specialized in trauma counseling. I was lucky to find one nearby and started treatment. The therapist concluded I suffered from PTSD (after scoring extremely high on the tests/diagnostic tools) and recommended eye movement therapy (EMDR) which has proven highly effective in the treatment of PTSD. She also said my seizures sounded like dissociative cramps. I have started EMDR therapy, and it seems to be working…! I have managed to wean off the latest anti-epileptic drug without any ill effects whatsoever. So far, I remain symptom-free, for the first time in five years, without drugs. It’s a very liberating feeling…I can only hope this will last, and that the doctors will agree to reconsider their diagnosis. It is very frustrating displaying all of those symptoms without doctors being able to correctly diagnose and treat them. I have been told I am a “difficult case”, but no doctor has seemed willing to think outside the box and consider an alternative diagnosis. It’s like they decided from the very beginning that I suffered from epilepsy, and they kept prescribing new drugs when the one I was taking did not help. I am very happy and relieved to have come this far, but a lot of work still lies ahead. However, it’s easier to accept that now that I have found a health care professional who listened to what I had to say, took me seriously, and suggested treatment that actually seems to work – unlike all the anti-epileptic drugs.
Louise 15th March 2019
I have been told by a doctor about a “functional block” between brain and body and directed to this website, but cannot find any information about it. This is in relation to episodes similar to dissociative seizures, but with clear awareness throughout but an inability to respond eg total body limpness, breathing stops. Brain is saying to breathe, open eyes, squeeze hand, but body does not respond. Preceded by chest pain, racing heart, bowel response. I can’t find any symptoms like this on this site, there is no dissociation at all with the episodes.
REPLY. I cant provide help on diagnoses for individuals, sorry. In general terms dissociative attacks/seizures and panic attacks are different, although share similar mechanisms in the brain. Many people with dissociative attacks dont experience any dissociation, although ‘body does not respond’ may in fact be depersonalisation. There are attacks which can have features of panic attacks like fast breathing, chest pain etc but in which people dont experience fear (so called ‘panic without panic’). There are also dissociative attacks where people have no warning and experience no symptoms of panic attack at all. What they all have in common is that somewhere in the brain there is a ‘red alert’ going off which the brain and body is trying to deal with in various ways. Typically there is no particular reason for it at that moment, ie the person isnt necessarily stressed when it starts, but the attack itself is stressful. More information on these pages (1 and 2 ) about attack treatment.
Randy , December 2018
It has been nice to confidently diagnose myself with functional weakness with the help of the internet. I still cannot understand why it had to be that way instead of by one of the 5 neurologists I’ve seen over the years. But enough about that…here’s my story: When I was 17 I brought home my Grade 12 school photo and my Mom pointed out that my left eye appeared to be drooping slightly. She said that I had ‘that thing’ (Bells Palsy) that my uncle had. I now know that was not the case. But from that point onward, I knew there was something going on. Over the next three to four years, my symptoms progressed. I experienced increasing hemiplegia on my left side. It affected my face mostly but also my forearms and shins. My eye began to droop. This was the worst when I was tired or after a night of drinking. I saw my GP and eventually a neurologist. After nerve, muscle strength and MRI testing were all a performed, I was told there was nothing wrong with me. Somehow, these symptoms slowly started to go away. By the time I was about 21 or 22, I recall having entire days and weeks where the thought or feeling of any symptom simply did not enter my brain. The dropping appearance of the left side of my face also went away and I had about 80 to 90% of my facial symmetry back. By the time I was 23 or 24, it was if the condition had never happened. Unfortunately, this would not last. After getting married (24) and having my first child (26), I noticed around the age of 29 – 30 that my symptoms had started to return. First I would have noticeable weakness in my face, then in my arms and legs. The eye drooping had returned and eventually got much worse. I again went through the process of seeing my GP and a number of specialists (primarily neurologists) about my symptoms. I had another brain MRI (clean), neck MRI (Clean) and nerve testing. I was again told that there was nothing wrong with me. Although, day after day, my symptoms worsened. I am now 32 and this recurrence has been going on for over 2 years now. I now have very noticeable asymmetry in my face with the dropping my my left eye, ear and left side of my mouth. These symptoms are seemingly worse some days than others. I have daily weakness, numbness and tingles down the entire left side of my body. My scalp tingles, my chest and arm tingles, and my leg tingles. Again, some days are worse than others, but the trajectory is trending downwards. These pins and needles feel like when a limb has fallen asleep but not quite as strong. It is awful – I just want to shake it off but I can’t. What is weird is that I can still feel the slightest touch to any spot on my left side. As my symptoms progressed I started weight training at the gym. My left side has about 85% of the strength of my right, but I feel it is decreasing. My leg side is putting on muscle similarly to the right, but the strength and dexterity are not the same. I can lift the weights but I feel as if the signal (from brain to muscle) is weak. The weakness or loss of dexterity in my left arm can be described as feeling like the function of a forearm, wrist and hand after coming inside from being outside in the freezing cold. It is very frustrating to feel tingles on the entire left side of my body at every second of everyday, but this is my life now. My wife and I now have three children and I need to move into a bigger house. I am afraid to pull the trigger on this for fear of becoming unable to work and unable to afford my mortgage. I do not want to become a burden. For now I am still trying to hide my symptoms from my friends, family and coworkers. I am ashamed that is affecting me so. I am still fully able bodied…it is just stressful to use my left arm and leg. I always squint when I look at someone eye-to-eye as I find it hides the asymmetry. I am terrified about how bad this will get. I do not want to become fully disabled when my wife and three young children need me the most. I hope and pray that these symptoms will again go away.
EDITOR: Its not a good idea to diagnose yourself using the website. FND should be diagnosed by a health professional with expertise in the diagnosis of neurological conditions. If you do have FND I hope the site helps you.
Alison, 6th March 2019
I was hoping to get a better understanding as to the classification of FND as it is classified in the DSM 5 under somatic disturbances. This makes it clear in my mind it is a mental health disorder however I don’t feel I relate to that, I’m finding to hard to know if I have a mental health issue or a physical health issue or both. Many thanks.
REPLY. This is a common and understandable question. FND is in DSM-5 which is the American Psychiatric Associations Diagnostic Manual. However those in the field are clear that FND is a disorder which is at the interface between neurology and psychiatry and in fact challenges the distinction between mind and brain. There has been a long battle to get FND recognised in both neurological and psychiatric classifications – thus far with only partial success. You can read an article we wrote about that here
However regardless of what DSM says, those of us in the field are pushing for this unified approach. FND now appears much more routinely in neurology journals, conferences, textbooks and curriculums, when previously it was invisible in those spaces. In answer to your specific question, its a disorder of the nervous system, leading to involuntary and real symptoms. To me the question is really hard to answer because there are no neat division in the nervous system between mind and brain. People with anxiety and depression have many brain changes. People with MS and Parkinsons commonly get psychological symptoms. Eventually we hope the World Health Organisation will catch up and amalgamate neurological and psychological disorders.
PS DSM also contains diagnoses like Dementia, Tourettes syndrome
Alison, 27th February 2019
Hi, I have a question rather then feedback. I’ve just been diagnosed with FND so learning a lot at the moment. I was relieved to know there was nothing structurally or degeneratively wrong with me! I would like to be clear, and I’m not clear, how FND is different to ‘anxiety with somatic symptoms’. I am talking to people about FND and have been asked questions around this line, I’d like to have a clearer answer. I’ve been suggesting it might be about symptom presentation ??? Thanks, Alison.
REPLY: This is a good question which I can answer as its generic rather than specific. Anxiety comes in many forms, generalised anxiety, panic disorder, agoraphobia, social anxiety etc. Its often thought of as a purely psychological cognitive problem – “I feel worried most of the time”, “I cant keep a lid on worry” etc – but the diagnostic criteria for it that psychiatrists use for generalised anxiety contain several physical symptoms – fatigue, poor concentration, muscle tension, difficulty with sleep, feeling restless.
The definition of a panic attack includes even more physical symptoms occurring as an episode: Four or more of palpitations, pounding heart, or accelerated heart rate; sweating; trembling or shaking; sensations of shortness of breath or smothering; feeling of choking; chest pain or discomfort; nausea or abdominal distress; feeling dizzy, unsteady, lightheaded, or faint; paresthesias (numbness or tingling sensations); chills or hot flushes – as well as several cognitive/emotional ones: derealization (feelings of unreality) or depersonalization (being detached from oneself);fear of losing control or going crazy; fear of dying
FND describes symptoms that relate to the voluntary motor and sensory nervous system – limb weakness, movement disorders, blackouts, visual problems etc – these are not part of the definition of anxiety. Although tingling and trembling is part of the definition of panic, they present in a different way that wouldnt generally be confused with FND.
Anxiety and panic are common in patients with FND, and its also possible to have physical symptoms of anxiety without feeling that anxious, but even with that, a large proportion of patients with FND just dont have an anxiety disorder (or any psychiatric disorder). So in some cases, depending on the symptom and severity of anxiety it makes sense to look at things from an anxiety perspective, in others it really doesnt, and in others two diagnoses, FND AND Anxiety need to be made and the way in which they interact discussed.
Ultimately the diagnostic “boxes” we have are imperfect. Diagnostic labels are helpful if they help people understand their symptoms better and/or direct them towards better ways of managing or treating them. Its often the case that people need to understand how these different diagnostic labels overlap with each other.
G, February 2018
Just writing this account was very useful in my recovery. Thank you for this website, it has been a real help. I hope what I have written might be helpful for others too. I’m happy for it to be feedback or a story. As you see fit.
My symptoms started about 18 months prior to writing this. I am a health-care professional working with people who have neurological conditions and, therefore, probably ‘know too much’. I started to notice paresthesias (prickling), fasciculations (twitching), vertigo and nerve pain shooting down my arms. I was sometimes woken up at night with muscle twitching. At the time, I was going through a custody battle with my former partner over our child, plus a number of other stressful life events. I remember very clearly telling myself in the months leading up to ‘discovering’ the symptoms, “life could be worse, at least you are in good health”.
As I was also aware that some neurological symptoms can be functional, I went to my GP seeking reassurance that it was nothing to worry about. This is when the health anxiety really kicked in. Over the next few months, I saw three GPs and two Neurologists to try and seek reassurance. I had an MRI and nerve conduction tests. Every test came back negative and every health professional said the same thing- it’s almost definitely functional. My thoughts prior to the consultations would always be the same:
“I must be assertive and not appear too anxious so they take me seriously” “If they tell me it is functional, it will be because I fit the ‘profile’- Young, female, works in health, history of anxiety, multiple concerns. They are jumping to conclusions!” “I’m still not sure I believe myself- why should anyone else believe me?” “But these symptoms ARE real even if they are functional in cause- I deserve a full investigation” “If only they could see my arm/leg twitching, then they would believe me” “But what if the consultant is clearly very concerned, then I’m going to have to wait for further tests and the results. Can I cope with this level of anxiety?” “If I do have something terminal, do I really want to know, anyway?”
To make things more complicated, I was becoming very anxious that if I had a diagnosis of a functional neurological disorder, or of anxiety, my ex would have a case against me in the courts. This made me more anxious. So, I was also having an internal dialog- “I can’t talk to anyone about this or else my daughter will be taken away”, “I HAVE to talk to someone about this, or else I’m going to have a break-down and my daughter will be taken away” “If I do have MND/MS etc, I may eventually no longer be able to look after my child anyway”.
It is difficult to describe how awful I felt for over a year. My health anxiety got so serious that, at one point, I started to believe I could no longer swallow and stopped eating or drinking. At this point, I was about 90% sure I was going to die in the next couple of years, I was crying at work, avoiding seeing patients who might feed my anxiety further and I very nearly went on long-term sick leave. I am very proud that I managed to hide all of this from my daughter, though. When, I thought that I couldn’t continue hiding it from her, I knew it had to change.
I told my GP exactly how I was feeling and decided to try Citalopram. I also told my mum, sister, manager and a few close friends how I was feeling. I felt at this point that I could cope, even if I was dying, I was supported. Around this time, the final results came back from the investigations and this was enough to reassure me that it was most likely functional, and even if there was something the consultants had missed, I HAD to stop worrying about it as it was killing me. The final consultant told me that he knows multiple doctors who have health anxieties, including himself at times. If you focus on one thing too much, you start to notice abnormalities. This was one of the most helpful things said to me in that 18 months. I was normal, not weak. He believed me.
I still get some of the symptoms but notice them less. I ruminate less. I try to diagnose myself less. I try to live life ‘mindfully’ and ‘in the moment’. I’m about to start therapy to try and work out how to prevent it happening again. I think my symptoms were a mixture of real symptoms with unknown cause (which I have probably had for years but never noticed before), symptoms caused by chemical alterations due to high anxiety, and normal functioning that I was focusing on so much, it started to appear to alter.
The way I describe it to others is: If you think of the body as like a computer: Sometimes you notice a fault on the computer, e.g. the mouse stops moving. You could take it to a computer shop to see if there is anything broken. If the computer repair-man couldn’t find anything wrong, you wouldn’t be told, “well in that case, you must have been making it up”. You assume that there must have been a ‘glitch’ in the system, which may or may not come back, and you will probably never know what caused it. These things happen.
Malibran September 2017
HI DOCTOR. AT FIRST I WANT TO APOLOGIZE BECAUSE MY ENGLISH IS NOT THE BEST, BUT I WOULD TRY TO DO MY BEST IN THIS LETTER FOR YOU.
MY NAME IS DOCTOR M AND I AM FROM MEXICO. I AM A FAMILY DOCTOR AND A FARMACOLOGIST. AFTER A COUPLE OF YEARS FEELING LOST IN MY ILLNESS I FOUNDED YOUR WEB AND REALY FEEL FOR THE VERY FIRST TIME AN AUTENTICAL RELIEF. I HAVE BEEN WORRIED ABOUT A LOT OF SYMPTHOMS THAT REALLY FIT IN A FUNCTIONAL NEUROLOGICAL DISORDER, BUT YOU ARE RIGHT, THERE IS SO MANY INFORMATION ABOUT THIS THAT EVEN A PHYSYCIAN LIKE ME IS STILL SEARCHING SINCE TWO YEARS AGO. I JUST WANT TO THANK YOU FOR YOUR WORK THAT HELPS AND GIVES HOPE TO MANY PEOPLE. SINCE IN HAVE BEEN READING YOUR PAGE I FEEL MORE CONFIDENT ABOUT THE FUTURE AND THE EVOULUTION OF MY SYMPTOMS AND I FEEL FOR THE FIRST TIME THAT NOT ALL IS LOST ANY MORE. There is still a lot to understand yet and each case is so different, but if we can recognize part of ourselves in the words of other people then we maybe can be able to understand the bottom of our aches and keep going with our lives. In the words of the poet Robert Burns : Oh would some power the gift give us, to see ourselves as other see us !
SINCERLY: A 33 YEARS OLD GUY WITH DEPRESSION, TOC, ANXIETY, FUNCTIONAL DISORDERS, A DOCTOR, FATHER, HUSBAND, AND FRIEND…
Reply from Dr Stone: Malibran’s feedback reminds us that anyone can get a functional disorder, including doctors. I and some colleagues wrote some years ago about a book written by Oliver Sacks the neurologist, ‘A leg to stand on’ which I believe described the experience of having functional paralysis. http://jnnp.bmj.com/content/83/9/864. I was honoured that Dr Sacks replied – http://jnnp.bmj.com/content/83/9/868. I personally think the way that Dr Sacks was describing his explanation for the symptoms is really the same as a modern conception of a functional neurological disorder.
Joan August 2017
This is one of the most explanatory sites I have come across to explain sudden symptoms in a person of good health working under high stress situations. Sudden unexplained symptoms reoccuring and i will use this information to pass on to my son to avoid further duress and worry.
Susan June 2017
I was diagnosed with this disorder in Feb AT Mayo Clinic Hospital in mid Feb. Prior to this sudden onset the beginning of the year, I had some clinching of the jaw and slight movement of my mouth going down on both sides. i went to a TMJ specialist who referrred me to a Neurologist and recived Dysport for Dystonia. Just slight movement of the mounth going downward. I wish someone would have told me at that time that could have been the beginning of the downward spiral I am experencing. I understand it is due to stress. I realize all the stressors I have been under the past year.
EDITOR: Stress is an important factor for some patients but not all and this varies a lot. I hope you find a way to improve your FND
Charles, Feb 4th 2017
Having suffered neurological problems for over 20 years and having suffered with most of the symptoms mentioned my GP’s at my Medical Center have been treating me as an MS patient even though my MRI scans came back clear, because they were treating the symptoms which they said was like MS. I recently was admitted to Hospital for more tests and my Neurologist has now gave my a confirmed diagnosis of FND, I can’t explain how it feels to at last have a confirmed diagnosis after all those years,I thought I was going mad.
Easter, Jan 13th 2017
I would like to share my story as I have had Conversion Disorder since 2014 and my symptoms are severe. I think my story will help others in their struggle to regain physical and emotional strength. When my symptoms first occurred in February 2014 I thought I was having a stroke. My left side became weak, I started to sweat and have temors and wanted to vomit. I was in a heated discussion with my supervisor at the time. I excused myself from her office and eventually went home because I couldn’t function anymore. I was put on bedrest and a couple of weeks later I experienced another episode and totally lost functioning of the left side of my body and vision in my left eye. My symptoms worsen and I visited doctor after doctor and had test after test until finally a wonderful neurologist diagnosed me. I started physical theray in the pool and counseling on a weekly basis. I couldn’t remember birthdates and important events in my life. However, my childhood memories came back to
me and I realized that I had been severely sexually, physically and emotionally abused throughout my childhood. It is a long journey for me, but every day I am healing and regaining strength and learning to love myself. I still suffer from symptoms of numbness in my hands and feet. Loss of balance, feeling that I don’t remember simple tasks or where I am sometimes. But that’s okay because I know where I started from almost three years ago and I will continue to look forward and accept what is behind me. Thank you for the opportunity. I hope this post helps someone to know they are not crazy and they are not alone. I share their pain, struggle and journey.
Kit, Nov 29th 2016
Hi I was told about this website by my Neurologist as l have just been told l have something called brain imbalance. I have just started to read your website and have found that l am not alone. I have been off work for weeks but managed to go back but it is a struggle. Yesterday l had to be brought home because l couldn’t stand or walk normaly and felt l was going to fall. This is scary especially when l am on my own either at home or out and about. I just hope it stops soon.
Caroline, Nov 20th 2016
I was referred to this website by the Hospital Neurologist… having experienced a multitude of the symptoms described which have resulted in a lengthy period off work – it was useful to read and understand ‘functional’ – the computer hardware/software analogy has been particular useful when explaining to friends/family.
GP in Portsmouth, UK October 2016
I just wanted to write to congratulate you on a fantastic website. I am a GP in Portsmouth and was recommended to look at your website by our ‘dizziness’ doctor. The information and factsheets on your site are extremely useful and I will definitely be recommending these to patients. It is also great that the information is available in different languages.Keep up the good work!
Janet Wendy 24th September 2016
I was diagnosed today at hospital with functional neurology disorder, Ive come home feeling relieved im not going mad, I was taken into A+E thinking ive had a TIA, this was July and im still experiencing speech problems, balance issues, severe fatigue, severe muscle weakness. Ive had many traumas thoughout my life and my son takes drugs and soon after a nasty verball phonecall from him i fell poorly.Ive watched both your videos posted on here and now i dont feel so alone
Anonymous 17th September 2016
I have only just recently been diagnosed with FND, I hadn’t felt well feeling like I was going to black out tingling in my arms and legs for a few weeks before seeing my GP who sent me for an MRI which showed a small lesion on my brain to which she sent me straight to the hospital to which they took some bloods and then the Neurosurgeon prescribed me with 1000mg of Keppra per day and sent me home, after a few weeks I still was not feeling well so saw another GP in the morning (mine was unavailable) who told me if the symptoms got worse to call an ambulance and go straight to hospital. well that afternoon I became extrememly unwell and was being rushed to hospital with a suspected stroke which was ruled out, numerous tests ( CT contrast on arrival, Lumbar puncture, EEG and other routine tests, which were all NAD) then discharged to home not being told a clear diagnosis but apparantly it was common and that I couold wake up the next day and be completely fine well that was 9 weeks ago and I have improved slightly but I am still unable to walk or talk properly and (almost stroke like symptoms) finally decided to see a private Neurologist who has now put everything into prespective,I have commenced physio and speech and am waiting on other allied health teams to come on board. This has been the hardest thing I and my family ( I have 2 boys both with forms of Autism) have gone through, but I am determined to get through this.
Steph 5th September 2016
I have suffered with blackouts for a number of years and at first I went to my GP who seemed to dismiss it as exhaustion or not eating properly even though I wrote detailed food diaries. So I gave up going as the blackouts seemed very sporadic and made no sense as well as changing my GP due to mocing. In July of this year though the blackouts changed to blackouts with shaking so I went to my new GP who sent me for blood tests, ECG and a neurological consultant. The blood tests and ECG both came back clear and my neurology appointment was only today. in between that first GP appointment and today’s neurology appointment, I had three more attacks – two of which had me taken to A&E. The A&E doctors had said it was more than likely to be epilepsy, so you can imagine my surprise when the consultant today spoke to me and said that it wasn’t but sounded more like non epileptic attack disorder. I was devastated as I didn’t understand everything/anything about it. He gave me this website and I have read through all of it since being home. A couple of bits like the attacks and Chronic Daily Headache matches me to a tee and other parts I can associate with but they are not symptoms I have all the time. I am so grateful for this website as it has made me so much more aware of neurological symptoms and feel ok to tell a psychologist that my headaches make me have down days and sometimes depression. I am now waiting on an MRI scan and referral appointment to a psychologist as well as my GP to presecribe Amitryptiline for my severe headache that I’ve had for over a month now
Anonymous 31st August 2016
Came across this link on Facebook today and reading through the site it answers so many questions about a range of odd symptoms I have had all my life. My Mother told me that from a few weeks old I had unexplained ‘attacks’ where I went limp and unresponsive. She went to the doctor and was told I was ‘out growing my strength’ and not to worry. I have had these attacks intermittantly ever since. For no apparent reason I pass out insomuch as I am unresponsive but can hear everything going on around me. I ‘come around’ after a few minutes feeling light headed, drained and hungry but can carry on as normal after about half an hour. Sometimes I have had these in clusters, say every day for three or four days then nothing for a couple of years. I had an EEG and was told it was down to hyperventilating as they made me do it when I was hooked up and it had a similar effect on me. End of, as far as the medical profession was concerned. Reading through here though I realise that other
things may be connected to this like the joint pain I have had ever since I was five, odd visual effects and migraine like symptoms over the years. Recently I have fallen several times with no apparent reason putting it down to being clumsy. I think it may be time to present my doctor with this information. Thank you.
Colin 16th August 2016
Been diagnosed with FND, i do have my doubts and think it is fibromyalgia, as symptoms match, it has taken 7 years to be told of this condition. I do suffer with vision problems, stinging in arms.legs and hands, shouder pain neck ache, trouble with walking and gripping at times. weather can affect it ,also stress and i have a trigger of garlic.
i am also taking a lifestyle break as it is affecting my work and on a final warning, which doesn’t help with the stess levels, can’t finish work because of the financial loss. i wasn’t told much about the condition only given this website address, which i have found a lot of information out. also suffer with migraines and have IBS.
EDITOR: Fibromyalgia is also a functional disorder which commonly coexists with symptoms of FND so its not a case of having to have one or the other – you can have both. It depends what the main symptoms are. If its mainly pain with minor symptoms of leg weakness then it may be more sensible to think of the problem mainly as fibromyalgia. If its mainly leg weakness with minor pain then a diagnosis of FND would be more appropriate assuming that there is positive evidence of a functional disorder on examination. IBS is also a functional disorder of the gastrointestinal system. Migraine is also much more common in patients with IBS and fibromyalgia.
Marie Theresa 9th August 2016
After experiencing balance problems, weakness on the Right side of my body, dysphasia and dysphagia and double vision for over a year, one overnight stay in hospital and a negative MRI I was eventually diagnosed with FND in March this year by a neurologist. I was given details about this website and although I recognised and related to many of the examples I think I had a bit of a meltdown and became increasingly anxious and feeling stressed about the whole thing, My GP prescribed me Antidepressants which have helped my anxiety but I have now been off work for six months and Iam at risk of losing my job. Iam a registered nurse andI cant see my being able to return tomy job in a clinical setting. My concentration and memory have also been affected and I have developed a stammer which varies in severity. I have a follow up appt with Neuro in a few months but I feel I was shown the door with no treatment plan and Iam still in limbo
EDITOR: Im aware that a website is not a substitute for clinical care. I hope that you can be provided with support to understand, manage and hopefully find a way to improve your problems.
Emily 26th June 2016
I would like to let you know that I am doing so much better following a correct & understanding diagnoses of functional Dystonia of the neck & shoulder three years ago.
I only made sense of things after meeting a neurologist who helped me understand that diagnosis. I worked hard through a state of panic and anxiety to get moving again. I had convinced myself I could never get through normal day to day things. My doctors helped with my health anxiety, and were there when I needed support.
With medication and advice I am now able to lead a normal life. I have been volunteering looking to work towards becoming a learning assistant, this is now something I am more passionate about than ever before.
I feel grateful for the knowledge, help and support I received from my doctors.
Stewart 11th April 2016
After years of feeling awful with my head feeling as though someone is stirring my brain and I cannot stand up without my head being strange. Sometimes I find it difficult to hold my head up and cannot stand up for long so it has stopped me
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