Functional Neurological Disorder (FND) : a patient's guide
including Functional/Dissociative (non-epileptic) Seizures, Functional Movement Disorder and other functional symptoms
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Svetlana 12th Nov 2012
Unfortunately, I have to add my situation to Justin’s. I am thankful to Dr. Stone for this website - it gave me the much needed confidence that IF I have a functional disorder, my physical problems are still real and not in my head. But, after having read all the explanations and patients’ stories on this website or elsewhere – I can not relate my own illness to any of them. Nor can I relate to any known organic disease – my problem is that not only my tests are negative but my symptoms do not look like anything commonly seen in both organic disease and functional disorders. As a result, nobody wants to deal with me - neurologists see all unusual as a sign of psychogenic, psychiatrists do not see any psychiatric problems and hence are not interested, even a specialist in functional disorders could not offer any help because my case is “too complicated”. Wherever I go, I do not move an inch toward at least explanation of my problems, to say nothing of treatment. I feel like an alien on Earth.
Justin 11th Nov 2012
Thanks for this website; although, in my case, it's lead to me being LESS inclined to accept my Neurologists diagnosis of a probable functional disorder. As you mention, it seems to be that after making the diagnosis, he doesn't feel there is any more he can do - the problem is that the senior Psychiatrist my GP referred me to is equally emphatic that my core problems are of an 'organic' nature. In fact that's the second Psych to say as much, and the second Neuro to disagree...
EDITOR: Justin raises a common problem faced by patients who get caught between health professionals who disagree with each other. Leaving aside Justin's case, much can be solved in this area if doctors developed mutual understanding that functional symptoms are not a diagnosis of exclusion, they should be diagnosed on the basis of positive physical signs (eg Hoover's sign) and not just because the symptoms are 'bizarre' or because of the patient may have had a recent stressful life event. Both neurologists and psychiatrists sometimes fail to appreciate this.
Sue 7th Nov 2012
What a find! I'm an Occupational Therapist working in a generic post in mental health. We cover a bit of neuro in our training and I have always been fascinated by the links to mental/physical illness. I am studying (and using) Compassion Focused Therapy and plan to try this with a patient with dissociative and functional neuro symptoms. This website will be very useful to use alongside CFT. I like the way it is written, (with humour!) so it accessible to professionals and patients alike. It has certainly informed me and will enhance my practice. Thank you!
Debbie 1st Nov 2012
My daughter started suffering epileptic attacks at the age of 6 after being born 10wks premature. She is now nearly 20yrs old and for the past 14yrs has taken tablets with the hope that her siezures will stop. In November 2011 she had videotelemetry for the first time caputuring 64 siezures in just 5 days. We were told by her consultant that her siezures were of both electrical and non electrical. I wish that we could of found this out much earlier in her life as i feel things could have been much better for her now. She has failed all throughout her school years, never having friends and struggling terribly with her learning. Her low mood, poor memory, concentration and constant tiredness has been perceived as her to be uncoperative. Shes never been able to sit any exams for absolute fear washes over her resulting in getting out of the room in any way she can, irrespective of whoever is standing in her way. We are now where we are today and she is at college doing maths, english, ict and and cooking once a week with some support on medical grounds. I have all sorts of emotions going round my head since this new diagnosis as i feel she has been pumped full of unescessary drugs for 14 yrs and greatly misunderstood. Thankyou for taking the time to write your information on this site as iv'e found it such a help and its given me a greater understanding into her siezures. When you talk of the early warning signs we can now relate her moody, snappy, almost argumentitive manner as a sign that one of these siezures are on their way a couple of hours after. Her last siezure was 31st October 2012 lasting from 6pm - 10.30pm with her being sick for the last time 2.30am. I video'd some of the siezure to show her consultant. This was her 160th siezure in 11 months.
Rachael (UK) 18th October 2012
Thankyou is all I can say....i have spent most of this afternoon reading every piece of information on this site after being given the address by my neurologist today.....i cried and cried...it was like finally someone knows what its like to be me. That its not all in my head that there are reasons as to why certain things dont function for me, why i have certain disabilities. Of course i can not say for certain if functional/dissociative sysmptoms are the cause of my problems as i am awaiting to see a Neuropsychologist/psychiatrist to 'confirm' my neurologists suspisions. This site and the information in it has been invaluable in giving me an understanding that although no clear neurological disorder has been diagnosed (awaiting brain scan), that there may be a reason as to why my body is behaving in this way...thankyou
Rachael 13th October 2012
Our daughter had an onset of "Pain Amplification Syndrome" or Functional Nervous Disorder, with toes-to-scalp chronic pain and gait disfunction, when she was 14; three weeks after falling on her head and shoulder and braking her collar bone during a dance rehearsal. She was correctly diagnosed by the chief of rheumatology at Children's Hospital in the USA, and she has been in two therapeutic hospital programs for a total of 6 weeks. Now 18 months later she is in a wheelchair to get around her large school. We know the wheelchair is both a hindrance to physical recovery, and an important aide to her independence as a happy, busy student. She has seen multiple pediatric neurologists and a psychiatrist, and has tried biofeedback, hypnosis, talk therapy, myofacial massage, physical therapy, pool therapy, accupuncture, etc. - all with no measurable effects. She experiences chronic back pain, numbness and tingling below the waist, slow stiff gait and sudden knee buckling. She says the pain feels like it is in her bones, muscles and skin. Her ribs can hurt so much that deep breaths are very painful. Sometimes after exercise, her legs and toes jerk and tremor for hours, and refuse to hold her upright. She must be particularly careful on stairs (she goes up and down seated) and in the shower (she uses a special seat). She takes a neuropathic painkiller which has helped quite a lot with the chronic pain and tenderness in her arms and shoulders. She is not depressed or anxious, and is an honors student with many good friends. When doctors suggested last year that her symptoms would go away with the correct psychiatric treatment, she was offended and desperate for months, and we looked for other answers. She now accepts that she may get better with appropriate levels of aerobic exercise, but that she will have to be very patient and persevere through the pain and other symptoms, perhaps for many years. We are seeing a new neurologist next week; I will direct him to your website, which is very informative and seems to describe her condition exactly. Thank you!
Sally 10th October 2012
I am so glad that I have been alerted to the existence of this guide. If only I had known about it a few years ago when my symptoms first struck. I feel so reassured. Thank you
Kerry Ann 30th September 2012
hi iv wrote a few times, i just thought id send an update. since we last emailed i have gotten worse. it has now went to the left side of my nervous system. however i am undergoing hypnosis which is going very well indeed!I know some people think of hypnosis and laugh but its nothing like on tv. when my symptoms are at there worst now i get paralized from the neck down my laft side face stll droops and my speech is still effected. but I am positive i will overcome this. yes there could be flare ups in the future but i have two amazing guys who help me with the hypnosis.
Ruth 27th September 2012
I learnt today that I have Functional Weakness I feel that a weight has gone off my shoulders...the neurologist who confirmed the diagnoses today told me that it was a complex issue which could easily be more understood on reading the information on this brilliant site. I was initially told that I had had a stroke then it was thought a kinked artery - its such a relief to know that it is not my imagination that makes me walk to the right,, fall down, feel that I am chocking, blurred vision, stammer and forgetting my words mid sentence.....its been a long haul reaching this diagnosis but such a relief.
Ivan 7th March 2013
First of all - This is the "Jaw Dropper" I least expected after searching the internet for an answer - After 5 MRI's - CT Scans - EMG's - Nerve study tests always with a negative response I have at last gleaned a door that will open to obtain an objective view to my pain and weakness - To be fair to myself , out of sheer frustrationI have actually asked two G.P.'s and my Consultant Neurologist to be referred to a Psychiatrist to see if it really was "all in my head" - these requests have been refused whilst ongoing tests are repeated, one G.P. actually said that he needed to be seen by a peychiatrist before I am - As I am sure you will appreciate,- my present feelings on this whole sorry state is as being let down by the medical profession in trying to bring about a difinitive diagnosis of which I am perfectly capable of accepting and dealing with - instead I am grasping at straws to try to understand why I am experiencing so much pain - numbness of limbs - muscle wastage -difficulty in walking - loss of bladder control - this web site has been a real eye opener for me and it is with a renewed enthiusiasm that I may at long last be able to bring a closure that help regain my self esteem but more importantly - MOBILITY,Many thanks for such a well designed, structured and extremely informative work.
Thirza 21st February 2013
I have just been discharged after six days in hospital after being admitted as an emergency having collapsed in the back of a friends car. My airway was contricted and it was difficult to breath and my body was limp. i was diagnosed with M.S. twenty four years ago and then re - diagnosed with FND a few years ago. I was frightend and upset by the way I was told this. I have lived in limbo since as my symptoms are no different and my attempt to overcome and manage these difficulties continued. The consultant was dismissive and unsupportive after the usual tests and I could not wait to leave the hostile environment of the hospital. Some doctors and nurses were very pleasant in their effort to understand what was happening but all this was undone by one consultant and one senior nurse. I left hospital in tears thinking that no person should be treated in this way. i left a lady in the next room also crying at the way she had been treated.My sons were devasted by the way I was treated and found it difficult to watch me getting worse over three days before I could get some access to my tablets - namely clonazapam to help lessen the clonus. I know that people with ME were treated badly before more understanding was published and I am hoping that people with FND will receive more help and understanding.
Nicola 10th February 2013
I had FMD and experienced some terrible treatment and opinions from doctors. "You are clearly not depressed nor are you a malingerer." "Did you experience a terrible childhood." I had a scary time in hospital and I looked for a webiste to help me. There was none. On occasion I worry about this FMD experience and look for information. This evening I found your website. It is highly informative and does make sense of what I experienced some years ago. Can you add to the website whether these disorders can return? This is a really helpful and informative website and all doctors should be made aware of it. Thank you.
Katie 6th February 2013
This is a fantastic website! i have just got out of hospital on thursday after being in for 14 weeks, had to learn myself to walk again, it was a long journey, as soon as my neuro diagnosed me it was such a releif! as i could tell myself "its finally not in my head anymore!" when my neuro gave me this website it was great as i managed to get my family to read it and my other health professionals in my care, felt like i was being understood more and began to have more support around me as they finally know that i havent been putting it on when it looked like i was when i really wasnt. im waiting to go for my week stay in hospital to see more doctors. Hopefully the appointments doesnt take too long. all the symptoms am having are near enough everything you have listed on the website,i keep having spasms and twitches in diffrent parts of body, id be sitting and id get one twitch then another, its a horrible feeling, im thinking this could be somthing to do with my functional neurological symptoms?
Vidhya 3rd February 2013
Absolutely fantastic website!!!. My brother is suffering from most of the symptoms in front page and did all the test to get answers. But he ended up being more anxious than before and was totally lost few days back. Today he sent me this website and as I read I think new day of hope is dawn for us. It was really cruel 6 odd years not to know whats causing the problem. From now on he can move forward getting life back. Thanks so much for creative a beautiful website.
Secret Sufferer 29th January
These are just some of the methods i have used to reduce my seizures, I hope these help :) i really want people to focus on the positives of progress rather than the negatives of set backs! :D http://www.facebook.com/media/set/?set=a.3757282509532.117202.1800574494&type=1
(Requires facebook login)
Tracey 16th January 2013
Thank you for this site, I was diagnosed with functional paralysis of my right hand side in September. My neurologist told me the story of how little we know about the brain and how it works, and that because I had 4 weeks in the summer where I was able to walk normally, it should go away again. He did organise physiotherapy at the local gym, mainly weight training and stamina training, which on a good day I can do everything. On a bad day well... I do what I can. However, I was given no explanation of what was happening to me, I felt like i wasn¨t being taken seriously. This website is so easy to use and gives good information in a language that is understandable to everyone, it has helped me accept my diagnosis and understand it. There are no websites in Denmark that explain or help. Just knowing I'm not alone is a big comfort and help. So thank you again, keep up the good work and heres hoping to a better understanding in medical circles about this problem
Linda 19th November 2012
My daughter has been experiencing vague episodes, fainting, and tremors since the begining of her GCSE's in 2011. Theses episodes are becoming progressively worse to the point where last Wednesday she had a sezuire lasting 5 minutes in duration with thrashing arms, legs and head. She has no recall following these episode and has short term memory loss lasting a couple of hours post seizure. She has other symptoms when she is free from seizures. Numerous tests have been carried out all coming back normal, which is good news in one aspect but such a worry not knowing what is going on. She was signed off from her neurologists as she went 6 month with out an attack but now has been referred back following recent seizure. No medical profession has even mentioned non epileptic seizures exist never mind explained in detail that it may be dissociative attacks just that they are not convinced it is epilepsy. This site has possibly gave me more information than we've had over the last year and half and during my daughters next appointment I will ask a lot more questions. Thanx you for possibly lifting a huge weight from our shoulders.
Gina 14th November 2012
Hi,I've recently been diagnosed with functional movement disorder. I believe the symptoms may have started from as long as a year ago after reading the info on this website, which has been very informative. In the last month or so I have been experiencing involuntary movements and facial ticks and was hospitalised for a few days at the start of these. I am very grateful for the support of my family as I fear without it I would not have been diagnosed as quickly or have seen the right doctors and would have felt even more frustrated than I do now. I am frustrated with the after care offered for one, It almost seems that since being diagnosed as not having a disease or mental health issue, which I am grateful about, I have been written off by health professionals. CBT was recommended to me but it seems I need to do all the chasing in order to help myself and to pay for it too( as medical insurance company is not willing to pay for it). It seems daft to me to leave people like me in the lurch when having this disorder can make you feel very isolated and unable to enage with others and activities in the same way e.g. I was unable to walk and needed a wheelchair for 3 wks and have been signed off my college course because of my inability to deal with anxiety and stress at the moment. It seems we are more likely to develop other problems such as depression, but no one seems to want to do much untill it happens, which seems crazy to me! thanks for having this website, it's been a comfort to know I'm not alone and has put things into perspective for me. Wishing everyone better,G