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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Nikki 9th July 2013
I just want to say thanks for understanding! I have been through so many MRI scans and goodness knows what with very little information Simply beginning to read this page is offering me at the very least the idea that these things are being taken seriously.
Steve 12th June 2013
I have just been diagnosed with Functional Neurological Disorder, having spent a week in hospital having many tests. I have found this website very informative, easy to follow and something to show my boss why I have been off work lately. Also a reference tool should I need to check on things as I try to deal with this condition and hopefully get back to a normal state again.
Louise 12th June 2013
in 2011 what started as a minegrain and pain/needles down one side turned into dissociative seizures, speech problems, shollowing problems, i loss my ablitiy to walk, in pain all the time and a long list of other systems. up until a month ago i was told that it was a mingrain and stress. i was send to have a mental health team and a load of pointless appointment. fainal i was seen by a nero that now about this site. It has given me answers to alot of the questions that i have and helped me understand alot of my symptoms making them less scary.
Alex 10th June 2013
First and Foremost, Thank you for all this vital information. I have been suffering for the better part of 10yrs, not understanding any of my symptoms or why they were happening. To hear doctors say "it all in your head" or "it stress" made me feel crazy and misunderstood about these very real symptoms. In the last 2+yrs, I have tremors, muscle spasms, a disturbed gait, issues with memory/finding words, felt disconnected, headaches, then started having dissociative seizures, which was just diagnosed. This has been life changing and hard to understand. This site made it easier to accept what is happening to me. Many of the quotes were like many I have said and experienced myself. Thank you again for this site. If I come upon difficulties talking to doctors, ect. I will be sending them to this site directly to help them understand
Jelly 24th May 2013
Hello, I came across this website today after spending alot of time researching my symptoms. I've been told I have an enhanced physiological tremor by my neurologist. I don't believe her; everything I have read indicates physio tremor is a quickly remitting condition and my symptoms continue to linger. Most of my symptoms occurred one night; after two months of dissasociative symptoms, panic disorder and generalized anxiety. On a particularly bad evening, I felt tingling spread across my face, tongue and lips; now they tremor mildly and I have difficulty swallowing (throat feels like it tremors and tongue shakes/gets stiff.) I also felt my jaw start to tremor; it was very bizarre. I experience severe pins and needles and burning in my limbs and face. I tremor in the morning terribly in my arms, legs, neck, hands. How can this be functional? I'm aware of the timing, but do the events have to be mutually exclusive?
Tremors can be caused by problems in the cerebellum; how can we tell the difference between a "benign" pathological tremor for which there is no diagnostic test, and a functional disorder? Is it not possible that I pushed a pathology "over the edge?" I can't relax, I'm frightened of these sensations in my body and I feel completely out of control. I worry I am going to become disabled. II'm 36 and newly married, my husband and I are trying to start a family which has been postponed lest I get worse and/or pass something on to my offspring. I'm scared to move my body for fear of trembling all over the place, and I don't want people to see me. I just feel that something must be pathologically wrong because I'm not getting better.
EDITOR: Jelly - describes a very common experience of trying to understand functional symptoms. Functional tremor is diagnosed on the basis of positive signs on examination. People with functional tremor usuall dont find there is a relationship between external events and tremor. Some types of functional tremor do start off as a physiological tremor. Other triggers for functional tremor include drug side effects and the type of tremor some people get when they have a high fever. Feeling 'out of control' is what you'd expect in functional tremor because the person with it is not in control of their movements. If they were in control then there wouldnt be any tremor. It is really important for the patient with functional tremor to have confidence in the diagnosis. Fear of a different problem will tend to make functional tremor worse. The types of rehabilitation techniques that can help in functional tremor are very difficult to do without some confidence in whats wrong.
Jean 16th May 2013
hello; my message is just to say that this website has been an absolute lifesaver for me and my husband since i started suffering from non epileptic seizures and other functional symptoms about two and a half years ago. thank goodness there are medical professionals like you and your colleagues researching this awful illness. most of the medical professionals we have come across have no clue about this or how to deal with it even if they want to be helpful. your website has helped from day one when luckily my retired OT husband found it. thank you most sincerely from us both
Harriet 9th May 2013
thank you for this site it has made a great difference to me. My symptoms come and go and i thought i was going mad. My gp found this site for me. She was great at understanding what was happening to me and helpng me to understand that it is not my imagination
Sarah 8th May 2013
Hello,I just wanted to say thank you for the information provided on this site, especially the "all in your head" piece. I have been hiding my seizures from my family (I'm away at college). I have not been doing well in school because my professors did not know I had seizures and I would be absent without any explanations because I did not want to lie to them and say I was ill especially since I feared this being made up in my mind even though I did have other symptoms that pointed to being ill such as vomiting, migraines, etc. (there I go again trying to prove that it's not all in my head).
I have definitely been ashamed of them for quiet some time now because of the same reactions from doctor that you described. I have failed to go through with all the testing needed because of how embarrassed I've been about it. The information you provided has given me the courage to finish all my testing so I can get proper treatment.
PS. The first professor to see me have a seizure told me a bad joke. She said, "don't worry about seizures. It's all just in your head." (Meaning if its psychological, it's in your head and if it's neurological, it's still in your head). I don't know if this is funny to anyone, but this bad joke helped me realize that symptoms are symptoms, regardless of their causes.
Stuart 22nd April 2013
been struggling for 18 months after collapsing with dizziness and 90 per cent of all the symptoms on homepage.numbness,,weakness,brain fog.muscle spasm seizures,chronic headaches,limb weaness.numb tongue.finally got diagnosed feb 2013.blew my head after always being so full of life.cant believe this has happened to me.
Jenny 14th April 2013
Would just like to say thankyou for this website! I had a neurologist appointment recently and was told I has functional symptoms and I should be reffered to see a phycologist. To be perfectly honest I said 'No! I'm not crazy' and felt really low that the doctor would suggest something like that to me. I didn't really understand why because I had no idea what functional symptoms is and being only 18 it was an ordeal to go to see a doctor in the first place nevermind understand all the long words he was using to describe what I had so he gave me this web address. However this website explains it in such a way that I totally understand why he would suggest going to a phsycologist and understand what he thinks I have. And also I don't feel alone anymore, It shows there are hundereds of people out there like me and most of all that I'm not mental!! Thanks again!
Lady Rebekah 14th April 2013
I found this site after I starting exhibiting signs of uncontrolled upward eye movements this week - and OMG after 9 years I feel I have found the answers! I have experienced a wide range of symptoms including dissacoiative seiesures, paralysis / weakness, fatigue, pain, memory problems, gait issues, spasms, functional dystonia, and I also experience migraine symptoms which are in the family too. Neuro have not diagnosed me and the last thing i was told by neuro re-hab was to avoid going for tests (i have had several, all clear over the years) and to focus on doing what I enjoy. I will say though in talking thru this with my dad i came to the realisation that my body was responding to my fear of men - after an abusive relationship in which is when the major symptoms all started I have perpetually been avoiding circumstances of bullying men but somehow still manage to attract them - last weekend I realised after a male neighbour threatened me for asking him via a polite note not to park in my mums disabled bay that I was still experiencing what i sought to avoid. The mind is pretty clever in a way but it has caused me a lot of grief living like this. Funnily enough I was refused help by mental health to be referred to a psychologist recently despite feeling suicidal and wanting to self-harm (i used to) mainly now because of how this has effected my life amongst other issues, Being frankly honest with myself about how I feel and why I am still so scared of men hurting me - physically more so than emotionally, but that too, made me realise my software was trying to keep me safe but I have become so fearful and angry as a result it has had the opposite effect. And I figured this out without the help of my Docs. I am mortified they missed this but not surprised. In realising WHY I am like this, now enables me to now make correct choices for myself without the fear input of being hurt. I am no longer willing to live my life in fear but focus on taking better care of my needs. Thank you. x
Bridget Mildon from www.FNDhope.org, 13th April 2013
April 13, has been declared Awareness day. Join others around the world as we unite to build strength with one another and find hope for better health and better days ahead. www.fndhope.org
EDITOR: Sorry for the delay in this posting
Julie 12th April 2013
Thank you from the bottom of my heart for creating such a compassionate and considerate website ,for all of those who in desparation are looking for help and guidence. Short story is, I have a 'High Steppage Gait' a totally bizare walk, almost that that of a prancing horse on my right side. It came on slowly 3-4 years ago and I too have been subjected to 'there is nothing wrong with you' and ' it's all in your head. I have had the shrugging of shoulders and even had an awful doctor shouting at me in a hospital corridor " no, no, no, put your heel down.. no. no. no go back and do it again!" this was in front of passing staff and patients. I am a quiet non-confrontational person in my early 40's.. I left the hospital as i have done at other appointments in tears..So now, I have paid for a private physio to refer me to see a Neurologist and I have my appointment for July. So I have light at the end of the tunnel so I can cope with the strangers who stare at me, who ask me what is wrong.. Like others on here, I 'try' to appear bright and sunny when discussing the problem, but socially i feel i have a black cloud on a balloon that follows me.. Tonight has been a real ray of sunshine finding your site and maybe now I have some hope that it's not as sinister as I thought it was.. Best wishes to all
Leslie 2nd April 2013
I am so happy that you have set up this website to help patients. The frustration I've experienced with control, then helplessness seems to be never-ending. This site will provide a safe, understanding place for me to explore and learn. The area affected for me is the throat, and alternately, loss of speech. God willing, I can be directed to the emotional cause and have the courage to work on it. Many thanks for the first time I've ever seen a focus on this issue.
EDITOR: Please note that in many patients there isnt an 'emotional cause' to find!
Dougie 20th March 2013
been refered to here by Neurologist, i should be relieved that its not MS, but the thing Doctors dont understand is why would i want to give up a job i enjoy, cant do anymore,cant do the two things i really enjoyed Guitar ,fingers wont do as they are told,and boating,you try climbing in and out a boat with no balance, so why on earth would i want to or "pretend " to be unwell?i now have a ATOS examination and a Diagnosis that they will see as malingering or you are at it! does "Functional" or medically unexplained Nerurological symptoms satisfy DWP,when my employer of twenty years wont have me back at work because i cant do 12 hour shifts and am unsteady on feet? just feel its a nice way of saying we cant find out whats up go away, sorry maybe view will change just want to well again and working and doing the things i enjoyed. website is great,informative,...just worry about people not beleveing that you are genuinly unwell.
EDITOR: Dougie describes a common and understandable reaction to a diagnosis of functional symptoms. Functional symptoms are however NOT 'pretending' or being 'at it'. Neither is the diagnosis a 'nice way of saying we cant find out what's up' . When diagnosed correctly functional symptoms are as clinically recognisable at the bedside and in clinic as migraine or many types of movement disorder. Like those conditions there is no laboratory test that allows you to confirm the diagnosis. Also like those conditions, they can be identified positively even if we dont know exactly why they have happened (we dont really know what causes Parkinsons disease, MS, migraine etc). He is right though that there can be a problem with family/friends/employers/health professionals 'not believing' there is a genuine problem. This is one of the misconceptions that this website tries to put right. The DWP (UK based social welfare) are obliged to make judgements about disability based on the nature of the disability, not the diagnosis. Look at the 'Family and Work' page for more information about this.