Functional and Dissociative Neurological Symptoms : a patient's guide

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Christopher 21st August 2014

After the neurologist explained everything made sense,though the lack of understanding of functional neurological disorders by some healthcare professionals is astounding as though it does not exist. The wosrt thing is not being bleived,though iam in constant pain daily and have difficulty with mobilit. More awareness of the neurological symptoms of functional or dissociative nature needs to be made ,to prevent people saying its all in the mind

Bill, 25th July 2014
I woke up one morning 21 months ago to find that my left left does not know where the ground is, unless I consciously reinforce that the ground will be there when my foot goes down. This is extremely tiring and has resulted in other symptoms coming to fore too. At least 8 from the symptoms list with the constant Headaches being by far the hardest to cope with. I have been in hospital twice, seen 3 different Neurologists, none of whom seem to have heard or believe in functional and dissociative syptoms. I have seen many other consultants without even a diagnosis other than 'you have been very ill with a very nasty virus and it will take a very long time to get better.' That by a Nuffield Neurologist! I only found this site as was directed here by my neurophysio. It helps me have hope that one day I will be able to reverse the many symptoms I have that are explained on this sight. I have myasthenia in my family and this has been told but none have picked up the slurred speech possible connection, for example. I have just come out of hospital. I was admitted with symptoms of stabbing pain down one side of my head, round my eye socket and down my jaw ( now permanently numb and sore) , severe pains down my left arm and followed by a sharp pain in my chest. They quickly realised it was non cardiac and wanted to just discharge me. I resisted and was grudgingly allowed to see the neurologist ( my third ). He basically told me I have to live with what I have. There was no mention of 'Atypical chest pain' which I have read about now I am home. This website gives heart to all those who have Functional & Dissociative Neurological Symptoms. If only there were a list of Neurologists we could all refer to so, that at least we could be seen by a Neurologist who is at least sympathetic and understanding of us. That is the top of my wish list. I am going to get another opinion. This time I am going to ask before I visit whether they have at least read this site and understand that there is more than Neurological Disease that they can diagnose. For now I will just say 'Thank You' Dr Stone for creating this site.

Stuart
I think your mention that these attacks aren't dangerous or can't harm you. This is incorrect and missleading i have had attacks where i have walked out to sea and had to be rescued by police. I have also self harmed where I needed 2 units of new blood. You need to seriously re-look at this

EDITOR: Dissociative attacks DO cause injury - bumps and bruises are quite common, occasionally I have seen broken bones and teeth. People may also fall down stairs or have attacks in situations like the one described such as having an attack in the middle of the road. I am still waiting however, and so are my colleagues to see a patient have a more serious injury than that as a consequence of dissociative attacks. Its an important point as many patients with dissociative attacks become concerned about the consequences of attacks and avoidant of going out on their own as a consequence. This is in turn can make the attacks worse. See this page for more.

Sally, 14th July 2014
I was told about this website two years ago by a consultant in stroke, who gave me the "hard/soft wiring" explanation for the acute neurological symptoms I was enduring. The loss of balance, left sided weakness, slurred speech, episodes of acute "unwellness" - like bad flu, eye problems and sudden unilateral deafness all pointed to stroke - but weren't. However, an MRI scan disclosed that I had had previous strokes. In the meantime, I began to relate my symptoms to having stopped (very very slowly) powerful psychiatric medication and now realise that all my neurological symptoms were most probably an acute discontinuation effect. I felt very disempowered by being told about this website and then abandoned. I imagine this is not uncommon. I agree that it is important not to treat people for known conditions like epilepsy if they do not have epilepsy. However, it would be helpful to stress that the brain is still largely uncharted territory and that its precise mechanisms and mode of action remain unknown (ref recent news about The Brain Project). What visitors to your website (directed by busy neurologists) need to hear is that whilst they may not have epilepsy we still know very little about what goes wrong or why. Dissociative disorder may be one explanation - but is probably one of many. And discontinuation of psychiatric medication and the aftermath may be one. The website is important - but can leave people feeling isolated

EDITOR: I recognise that many patients share Sally's feelings about being 'dismissed' by a neurologist who tells them about this site but doesnt appear to provide follow up or support in trying to understand a complex problem. I think the situation in many neurology clinics is better than it was 10 years ago when there was absolutely no information and patients were often just told they had 'no neurological disease'. Hopefully things will improve slowly for patients especially now we have patient run support groups like FND hope (www.fndhope.org)

Sally is correct that we still dont know as much as we would like about functional disorders, but neither do we understand the CAUSE of most neurological disorders, like migraine or epilepsy. But they can still be positively identified to the benefit of the patient. Side effects or withdrawal effect of medication are just one of many possible physiological triggers for functional disorders although clearly that may not have been the case for Sally. Dr Jon Stone

Vickie, 18th June 2014
I have found this site extremely informative. I have just about EVERY symptom mentioned. I have found some of the pictures to be like looking at myself in a mirror! These symptoms had been frightening for me especially not being able to open my eyes and mouth drooping. My DX is severe M.E as I also have flu type symptoms and a great deal of nausea. I have been ill for 9 years now and I am intolerent of ALL meds, anti-depressants in particular induce seizures.I really do feel very ill indeed. Armed with all this knowledge I am now more "at ease" Thanks so much

K, 2nd June 2014
I was just emailing you to give you a quick update of how I was getting on.
I'm still at college studying nursing, a short time after I was unwell we got a dog who has been my saviour in building my confidence back up, he has been my bestfriend from the word go. I am a member of the local gym and go everyday, almost two hours every night. I live a very active life now, a few weeks ago i completed a tree top assault course, last night I walked 10 miles charity with the dog, next weekend I am walking a marathon walk and at the moment I am training with a group at the gym to do survival of the fittest in October( a 10k army assault course).

I still have regular migraines, sometimes my limbs twitch and I get regular dead legs or cramp in my feet but nothing to hold me back. I have noticed that I can't stand bright lights and loud noise, I have to go to the toilet more frequently than most people, and I stutter and sometimes struggle to find the word that I want to say or I say things back to front (I would say I have lost my key house instead of house key). However I found ways to get round all of my weird and wonderful symptoms that make me who I am.

I thought you'd like to hear about my progress and hopefully tell other people in the same situation as I was to show them that their is a light at the end of the tunnel.

Trudy 14th May 2014
Hello, I am 49, female, of very good health until 3 years ago. Had 2 major spinal surgeries within 18 months of each other due to being diagnoses with Degenerative Disc disease. About 7 months after my laster surgery I developed these "neurological" symptoms of falling over, poor balance, extreme diziziness, pins and needles, weakness, speach problems and memory/concentration problems.I have been round and round to various health professionals who have all diagnosed different things but I am at last in the care of a neurologist who is taking this very seriously as I am now disabled.I am not yet fully diagnosed the FND as MS is still a possibility and I am currently having tests to rule this out. When I was forst told it was a functional disorder I didn't want to beleive it as other things I had read about really indicated that this is all in the head. However my neuro pointed me to this website and I have to say it has been so helpful and reassuing and I now feel much better that this is not in my head, it is real and that i'm not alone.Whatever the outcome of my ongoing tests I would recommend this site to anyone having these problems. It's so clear, understanding and helpful.Wishing my fellow sufferers a brighter future.Thanks

Ian 21st April 2014
hi can i just say after several trips to walk in centres, g,p's, a&e, i was taken to the stroke ward because of slurring of speech and unable to walk or lift my left side at al, told your fine your brain scan and bloods are clear bye if you have further attacks dont come back it realy makes you feel bad. i was then taken to a further a&e who then admitted me to the neurology ward, who then said your depressed, my symptoms did improve but my speech was still slurred and walking was all over but told me of your site which i find helpful. unfortunatley i'm now having a worse time then when i was discharged. to the extent i was again taken to a&e as i could not recover from three seizures in the home and ambulance to once again told don't bring him to the stroke ward then after another seizure was discharged and told i was wasting valued time and resources i now feel im losing all faith in drs. i'm no closer to finding thigs out but your site does help but you need guidance to be able to help yourself.sorry if ive moaned and this mesage does not make sense as im not functioning too good

Jennie 15th April 2014
Thank you very much for your very informative site and links to articles. I am a Speech and Language Therapist and have found it very useful in working with people with functional stammer.

Jane 15th April 2014
My 15 year old son was diagnosed with conversion disorder last summer. At the time I was desparately searching the internet for any information I could find on the disorder. I stumbled upon your website and it helped me immensely. My son spent two weeks at Children's Hospital and another month at a rehab facility for children. Since that time he has been in a school based partial hospitalization program. He spent three months in a wheelchair, could not move his legs and at times his arms, had seizures and blackouts, severe headaches, "foggy" brain, and extreme fatigue. He is finally leaving the partial hospitalization program next week. It has been almost a year, but he is almost 100% fully recovered. The most difficult thing for him and for us was thinking it was strictly a psychological disorder as some of the first specialists suggested. He was a straight A honors student and all star athlete. He was not anxious or depressed. He was hit in the head with a baseball and things went down hill from there. I just wanted to thank you for his website. It meant a lot to me!

Julie 19th March 2014
Hello I went and seen a neurologist two days ago and gave me this website address, I would like to say thank you as I have had symptoms for 16 yrs now and when it first started I was fobbed off by doctors and medical staff, but recently my syptoms have got worse, doctors thought it was a mini stroke in which I have had MRI scans and CT scans that showed nothing in which i felt very alone, and felt like i was going crazy

I have had outer body experience, vertigo,nausea, rapid head movements in which is hard to control, loss of concentration and finds it hard in thoughts of words and getting the words out my mouth also i do not sleep very well, and gets anxious, depression, and worry alot, its nice to know i'm not the only one in this world with this. My neurologist has put me on 30mg amitripline and gabepentin. please can you tell me if there is any support or chat rooms were persons with these conditions can talk and help each other to control and suggest things people can try, as i'm finding it very hard at the moment and am getting the feeling of being scared. I am still finding it hard also to talk to my husband and he brushes it off and don't understand and says well i will just have to live with it, and just don't know how to describe it to people and when i talk to people about it you can see on there faces that they look at me if to say Mmmmm in which i give up as they don't understand what i am going through on a daily basis and what i have to live with.

sometimes i think im not a human being as i sometimes stutter or loose words and forget words in which people look at me oddly, but thank you for this website, and will be giving this to my employer as she says what is? etc. so thank you for everyone putting feedback on here so i know i am not alone in this world and there is other suffers going through the same thing as me.

Charmaine

My name is Charmaine. I have been diagnosed as having functional movement disorder. The onset of my symptoms was very sudden. Over the past five months I have experienced quite an array of the symptoms which fall under the umbrella of the disorder; including non-epiletic seizures, blackouts, spasms, tremors,weakness, confusion and facial and hand contortion etc. Whilst my neurologist has been extremely supportive, my experience during four hospital admissions has been variable. I have found that some medics have had very little knowledge of the disorder, and experienced some negative attitudes from nursing staff, who have commented on my behaviours, including a suggestion from one nurse that I was putting the symptoms on.

Thankfully with the support of my neurologist and having been directed to your site I have developed my knowledge of the disorder. I am making great progress, and have learned to accept some of my strange behaviours and limitations I have. Loving my careeer as a social work manager, I have found being unable to work one of the most difficult aspects of being unwell. I have reached a point whereby I feel fairly well. I have the occasional relapse of spasms and shakes but am not currently experiencing blackouts or seizures or any impairment in my thinking or memory. I wish to return to work, but have been deflated by the attitude of my employers who are reluctant to have me return to work at this point.

I would be interested in posting my story if it would be of help to others, and feel that feedback may also provide me with some inspiration to remain positive in the puruit of recovering fully

EDITOR: thanks Charmaine. I'd be delighted to post your story and if anyone else would like to send one please let me know via this feedback page. Dr Jon Stone

Anonymous 28th February 2014
Thank you for this great website. I struggled with pain, muscle twitches and tingling in my legs for many months with no answers after tons of tests and doctor visits. This website gave me hope. And was one tool that helped me move foward. Stress, anxiety and your mind can have a great impact on your health

Pete 30th January 2014
After nearly 20 years of living in terrfic pain, finally I have seen someone who talks sense, she gave me this website and now I wait for an appointment to get more help. It is a releif to know that after years of being given pills after pills I will get treatment. Your site is helping me understand it all. Thanks.

Sharon 27th January 2014
i was taken into hospital in april 2013 with stroke like symptoms down my right side after an mri ct and many other tests they have all came back clear and they put it down to a functional stroke which i have been having physio for once a fortnight which hasnt helped much i now use a wheelchair on a daily basis but try to use a stick indoors to help me get around,i have now basically been left to my own devices the stroke association came out recently and said that she had never heard of anyone with a functional stroke to have symptoms lasting as long as the ten months like mine have lasted so she has sent me a leaflet on medically unexplained symptoms and that is it as far as i am aware.it is very reassuring to read that i am not alone in this matter but am going to return to my gp as advised

EDITOR: thanks for your feedback. The new patient factsheet from Chest Heart Stroke Scotland 'Understanding Functional Limb Weakness' was specifically designed for patients with functional limb weakness who find themselves in Stroke Units among other places