Functional and Dissociative Neurological Symptoms : a patient's guide

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Sharon 1st June 2015

I am so relieved to have been shown this by my Doctor as I have had horrible sypmtoms for over a year, nearly every symptom on here I am suffering from. All down my left side, the facial pulling, jerks, electric shocks, numb, pain and weakness. I have had so many tests done and been so frustrated and alone. I cried when I started to read this site and am so grateful for it and knowing that it will not be permanent is a really joyful feeling. I am relieved I am not making things up and understand that I need all the help I can get to allievate if not irradicate it. Thank you so much for this site, it makes a huge difference in the mind to know I am not making it up. So onwards and upwards thanks to my Doctor too leading me here and to you.

Donald 6th May 2015
Thanks for your marvellous web site. My daughter is caught up in all of this. I had a strong sense that she needs to be heard and your site gave me a way of understanding things. This gives me hope

Jackie 30th April 2015
Finally a diagnosis! I'm a newbie to all this, and live in New Zealand. I was admitted to hospital 25/3/2015 with a suspected stroke (full right hand side weakness and numbness) Although no eveidence via CT scan or MRI showed a stroke or TIA I was treated as though I had suffered a stroke. Being born with Spina Bifida and a diagnosis of Chiari Malformation in 2013 it was thought that this might be the issue, possibly with spinal nerve compromises ect but a further MRI of the brain and spine have shown no issues with nerves in the spine or compromises in the brain. Gradual return of strength in the right arm and hand but right leg numbess/extreme cold "feeling" still remained. Sent home after assessment of being able to walk to some degree with confidence even though I was still quite unsteady on my feet with a walking stick and still not able to feel anything from the right knee down, NO proper diagnosis given. Over the last 2 weeks on return home I had gradual spread of numbness and extreme cold and weakness to my left leg rendering me totally numb from the knees down in both legs. Re-admitted 29/3/2015 this time seeing a new neurologist who finally gave me a diagnosis of "Stocking Neuropathy/ Functional Weakness. Finding it all very frustrating at the moment as I have always been very active doing aerobics, cycling, hiking, fly fishing, surf casting and everything in between to live life to it's fullest. I had my Spina Bifida repair done at 4 days old and my family was told 24hrs she will either make it or not. 45yrs later I'm still here living life and have not let anything stop me from living a full and healthy life, I'm a fighter until now. I know it won't be permanant and I intened to beat this thing like I've beaten everything else, but being fresh off the boat so to speak in my new world of this condition it is taking a while to get used to it and to also process all this new overwhelming information about this condition, especially when it is given as not being all in my head but to some degree it is. I knew I was always weird, at least now I have proof! Bahaha!

Melanie 28th April 2015
So pleased i have found thus website and a neurologist who really cares about these problems. I was diagnosed with Dissociative Seizures in 2011 after many tests and unhelpful remarks by people of the health profession. I am a midwife and was shocked by their attitude! Anyway for some reason my Dissociative Seizures have returned I can recognise I am anxious and can only put it down to this I saw a gp today, never see the same one twice since my regular gp retired, and he had the same old attitude but has referred to me to the epilepsy clinic???? despite him telling me I dont have epilepsy. Really I just want antidepressants to dampen the anxiety but could not tell him that now what do I do ?

Dear Melanie - sometimes the most expert therapeutic help for dissociative seizures/attacks is based in the same centre as the neurologists. Sometimes unfortunately there is no service at all. Many GPs become anxious that the diagnosis is correct after a gap which is why they may want to go through neurology again but I agree that could be a frustrating delay

Liz 20th April 2015
your pages are very interesting, but all they do is confirm to me that my condition is not functional.
The problem is that firstly not everyone fits into the catagories so neatly placed, but I also feel that there will be a cause, in the future, that will show that these symptoms have an organic nature. We believed leeches cured everything, we believed consumption was a single disease, we have a lot to learn yet about the human body.
Sadly I fit into the catagory of a 46 year old (so middled aged) female, I had a positive MRI, with 3 lesions in my periventricular region, my left optic nerve is pale and mishapen. Now I am told, as many other people in my position are, that it is functional as the further tests show nothing. I read your site in deperation to find answers, but all I found was that the symptoms I have are not in any way related to the functional episodes described.
I believe neurology is in grave danger of missing many people who are suffering, by labelling them as functional.
Living in limboland is horrible

Dear Liz - I dont know whether you have a functional disorder or not. Clearly this website is only relevant if you do.
It is worth emphasising that a functional disorder should never be diagnosed just because 'tests show nothing'. It is a diagnosis that should only be made if there are clear positive diagnostic features such as Hoover's sign or Tremor Entrainment test. If these features are present then it is also a diagnosis that can occur alongside structural neurologcial disease such as multiple sclerosis. It is not a case of 'either/or'. We certainly have a lot more to learn about the human body but I would argue that it is alread the case that we are beginning to understand how the brain doesn't function correctly in functional disorders and in that sense we have already begun to understand their 'organic' nature. The model we have for these disorders already includes biological factors. Please see the page on Misdiagnosis for further discussion. Best wishes Dr Jon Stone

Laura 27th March 2015
Hello, This is the one website I have found that i can completly agree with. Im in a situation where I suffer from anxiety & depression and GP is persistant on treating the depression whereas if they would just focus on the neurological symptoms I would get better as oppsed to becoming more depressed.

Joanna 23rd March 2015
Hi there, just wanting to congratulate you on a fantastic website. I wish I had found it sooner. As a physio I have worked with many people of different ages with functional disorders and it is often a challenge for them to overcome others' negative comments/incorrect diagnoses and move forwards. Now I have a great resource to point them towards. Thank you

Heidi 5th March 2015
I just found this website and I am so utterly grateful for it. It just changed my life. When I was 16, I began having daily tension headaches for months. Afterwards huge tics appeared and the headaches stopped. A little later 'dropping' was added to the list and sometimes I would snap out of it, other times it was as if I floated above my body for several minutes. 13 years after that, I began having seizures, up to 40 a day. Other symptoms such as tunnel vision and face blindness happened on occasion. Also, before and after some seizures, I would lose the ability to speak. For 22 years I have been my own best detective. I KNEW all of these symptoms were connected, but every time I tried to tell a doctor about it, I received a hand (as in 'stop') and he looked away. Not one doctor has heard me out. I have been called crazy. I have been told it's my fault. I have been told there is nothing wrong. I have been told to stop wasting the doctor's time so he can treat 'real' patients. Finally, this site validates what I have been going through for most of my life. I have found I must have very good sleep, healthy food, a lot of excercise, meditation, and a peaceful living environment in order to feel well. I have been to a lot of therapy and it has helped in some ways, but intellectually I have a good grasp of things so there is a limit to it, as my body hasn't 'gotten the memo'. EMDR and hypnosis have really helped. I am working with someone now who is amazing and really motivated to figure this out and help me. I sent him this site and I am looking forward to using what I have learned today.I am very motivated to get better. I always have been! No one likes feeling this way. It's awful! Even though there is still a lot to figure out, I now finally feel like I am armed with a real explanation and knowledge is power. Armed with all of this new information, I feel better equipped to get to the bottom of it and enhance my quality of life. I have never heard or read anywhere in the last 22 years of my search ANY explanation of what it looks and feels like to 'drop' to 'black out' or to have the tics or one of these types of seizures. I don't feel alone anymore. Many people out there understand and have felt the same things I have. Thank you Dr. Stone-Heidi USA

Gillan 2nd March 2015
I'm so glad that I read your web site. For the first time my problems make sense! Thankyou so much for all the work that you have done in this field.

Trevor 19th Feb 2015
I was diagnosed with idiosyncratic PD in 2010, and have been on Madopar since. Last year the old Neurologist retired, and a new one came on the scene. He decided to send me for a Dopamine transporter scan. Just after the new year 2015 I recieved a Letter to say The Scan was definately Parkinsons related. and that was probably the Diagnosis. Then i go see the neurologist in January, to be told he thinks it is PD, but the radiographer thinks otherwise. one says the scan is normal, one says the scan shows subtle abnormality on the right side of Brain.Now the Neurologist thinks it may be a Possible functional tremor, and asked me to look at a website www.neurosymptoms.org. I had a look, and I can see to a lesser or greater degree I have some of the problems mentioned. However now I have looked, I am even more confused than ever, especially as the letter states there is some abnormality, but all is normal, and they have to still clarify this diagnosis with further discussion with Radiology.If one person sees some abnormality, yet the other says no, it is normal, who is one to trust?Obviously if it is Not PD, I do not wish to continue taking Madopar. On the other hand no one has suggested I stop it. In fact, I am so damned fed up, after this last lot is finished with, I am not ordering any more. and will see what consequences take place if any. If I want answers it seems it is going to have to be a DIY job.

Dear Trevor - your email reflects the situation that many patients with functional disorders find themselves in. Functional disorders can be made confidently and if that is the correct diagnosis its important to find a physician who can explain the rationale for the diagnosis. It then becomes much easier to move on to treatment.

Laura 15th Feb 2015
Thank you for this website and all you are doing to raise awareness and change perceptions. You are clearly doing some wonderful work. I just want to ask a question really.

I am interested in the apparent similarities (as far as I can see - I may be wrong!) between Parkinsons and FND. It seems that Parkinsons doesn’t show up on an MRI or EEG, or any test as far as I can see apart from possibly a PET scan, but is usually diagnosed on the basis of a particular set of symptoms. I also read an article in the NY Times which reported that people with severe Parkinson’s can often still run, ride a bike, swim, etc, and there seems to be a famous account of a group of Parkinson’s patients who were caught in a fire and managed to run down steps and escape, only to freeze in place when they got outside.

By all accounts this sounds to me very much like FND, and these kinds of movement patterns indeed seem to be used to diagnose FND - but FND obviously has a slightly different/wider set of symptoms. I haven’t been diagnosed with FND yet, but it’s been explained to me that it’s a possibility so I’m interested. My main symptoms are balance problems and gait abnormalities. My symptoms are much better in the morning after a good night’s sleep, which seems to be the case in Parkinson’s too. I was wondering whether groups of FND patients have ever had their dopamine levels tested, or been trialled on Parkinson’s drugs. Is it possible that there could be a link that has never been tested - or at least a link between Parkinson’s and certain sub-groups of FND patients? Many thanks for all you are doing.

Dear Laura

Thank you fo your kind email. Youve asked a very interesting question. Its true that patients with Parkinson's disease can sometimes do things that are surprising when they are alarmed. Certainly its been demonstrated that they often find cycling easy than walking. Running can also somewhat easier, in fact this is one of the features of a Parkinson's gait - it tends to speed up (so called festination)

Variability can be a feature of several different neurological diseases, including Parkinsons disease and conditions like myasthenia which can vary through the day.

In FND the difference is the nature of the variability, which is dependent on whether the person is focusing on the task or not. If someone has a tremor or stiffness with Parkinsons disease and they are asked to carry out a complex task with their better hand, their Parkinsons tremor or stiffness typically gets worse. In functional tremor it typically improves transiently. Similarly although someone with myasthenia may have variable weakness, that weakness does not transiently improve when they are focused on moving another body part (as happens in Hoover's sign for functional limb weakness). You are also right that their may be SPECT scan differences in Parkinsons (although those scans arent 100% reliable either and can have false positives and false negatives)
Its very important in diagnosing FND that there is clear evidence of one of the typical signs as many movement disorders due to other neurological problems can look strange or inconsistent. For example people with cervical dystonia (torticollis) can transiently make their head straight by touching their chin.

Its not really possible to easily test dopamine levels in the human brain or spinal fluid. Some of my patients have taken levodopa, often because doctors were wondering about other conditions. None have had a sustained and consistent response and there could be hazards in taking levodopa in a situation where dopamine was normal.

There are however studies showing that patients in the early stages of Parkinson's disease are vulnerable to developing a functional disorder than patients with some other neurological diseases, so there may be something to explore there, although Parkinsons disease causes effects in many neurotransmitter's even though dopamine loss is the main one associated with the motor symptoms. - Dr Jon Stone

Stuart 29th Jan 2015
was reading your dissociative seizures. Found it useful. I see my neurologist next month. I have often had blackout sometimes lasting over 12 hours often with self harm or od; sometimes been taken to emergency dept (ed); been in ed then sent home but have no recollection of any of it; i really don't know how i'm still alive where others may of not been so lucky. I had a eeg done - had a shaking attack through it but they said my brain waves where normal so ill have to see what my doctor says when i see him and if there other test he will do

David 6th November 2014
I wuld just like to thank you for your site and its content.My life changed in November 2012, when I was diagnosed with Chronic Venous Insufficiency; shortly followed by Erthromelalgia; then Small Fiber Neuropathy; then Chronic Lyme Disease; and, due to these diseases and my autoimmune system becoming significantly compromised, many other issues have occurred.My neurologist suggested I look at your site and also we are trying to find a suitable neuropsychiatrist for me to see.Reading your site has made things a lot clearer and made me more comfortable. I have a number of the conditions you covered - e.g. dissociative movement disorders (20-60 minutes of involuntary movements, while I am conscious; followed by 1-2 hours of paralysis), dystonia, myoclonic jerks, walking gait and facial spasms.My wife and I will continue to refer to your site and its links.Thank you!Kind regards,David

Helen 11th September 2014
My 20 year old daughter has been diagnosed today and is now home from hospital. Its awful to see her struggle but we are keeping positive and holding onto the thought that she will get better. My husband as Cauda Equina Syndrome so can help with advising Laura on how to use the stairs etc.Thank you for this most informative webite