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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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

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 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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