Functional Neurological Disorder (FND) : a patient's guide

including Functional/Dissociative (non-epileptic) Seizures,  Functional Movement Disorder and other functional symptoms

Hemi

neurosymptoms.org

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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

 

I also want to apologise if you tried to leave feedback over 2017 and 2018 but didnt receive a reply. There may have been a problem with my website hosting that didnt inform me

 

Many thanks, Prof Jon Stone, Consultant Neurologist, Edinburgh

Previous Feedback

Click on the drop down pages on "Feedback" for more feedback

Click on the drop down pages on "Feedback" for more feedback

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.

 

 

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 walking far. Eventually told I have FND  and they cannot help me. I have searched so many sites and have not found any symptons that I suffer with. I have no life now as movement is awful and there is no help out there.

 

EDITOR: I hope some of the information on this site is helpful - some patients do experience unusual sensations in their head as if there is movement in their head or of something 'sloshing around'. This is more common in patients with chronic daily headache and persistent postural-perceptual dizziness.  These symptoms, which can be understandably alarming to the individual  appear to be part of a functional disorder in many cases but clearly this is a diagnosis that must be reached by the assessing neurologist.

 

 

 

 

 

 

 

 

 

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