Functional and Dissociative Neurological Symptoms : a patient's guide

Hemi

More Feedback - Page 10

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

Brittany 5th May 2012

I have been recently diagnosed with a functional movement disorder after having problems with walking and coordination for 10 months. I just wanted to thank you for the information you have provided on this website. It has really helped me understand the disorder and most importantly that I'm not making it up. It has been a long battle for me but I am happy that I now have an answer and can focus on re training my brain to help me walk with a normal gait. Thank you,Brittany

Rebecca 4th May 2012
I was diagnosed with functional gait disorder after 6 months of neurological investigations. No real explanation of the diagnosis was given either by GP or by neurological consultant so I am very pleased to find this website that does explain the diagnosis very clearly. However, I think doctors in the future will look back on this and stick it in the room marked 'medical cul de sacs' along with wandering wombs and unbalanced humours. It seems to me that doctors cannot accept that just because they can't find find an organic cause it does not mean there isn't one, despite the obvious fact that medical disorders have been misunderstood and inappropriately treated since the year dot. 'Modern' medicine has always been around, and doctors have always thought they were offering cutting-edge treatments - until the day when the real cause was discovered, usually by a talented doctor daring to think 'outside the box'. For example Dr John Snow and the London typhoid epidemic, or Dr Semmelwies and puerperal fever. Neurologists don't know everything about how the brain works but you'd never know this from talking to one. I'd much rather have a doctor say "You have something wrong with you but I don't know what it is" but pigs will fly before any doctor is prepared to say that to a patient. I have been patronised and insulted by medical staff at all levels. I have problems with benefits, don't know what to say to friends and family, have now lost my job and am at the mercy of constantly fluctuating symptoms Exercise makes me more ill. CBT is in my view little more than a very profitable industry with almost no good evidence to support it, but it is handy for doctors when they are stuck with a patient they can't diagnose or treat sucessfully. I do not need a psyciatrist. I need a doctor to actually take note of my other symptoms. Presumably they are not on the list of approved symptoms as I might as well be talking to a wall. Maybe there is a doctor out there who could help me, possibly not, but going down the path of functional disorder is, I feel quite sure, not going to offer me anything.

Jools 30th April 2012
I found this site amazing as it described exactly how I feel and the way that others react to my condition. This site descibes me exactly. I would be interested in speaking to others with the same condition if that is possible. I am doing a degree in Psychology and criminology and would like to bring awareness of the condition.

Sarah Louise 18th April
I am very pleased to have found this incredibly helpful website. I have been suffering from an anxiety disorder for most of my life and about five years ago I started to suffer from physical symptoms that have made it very difficult to function normally. These include weakness, collapses, (scary!) memory problems and dissociation. It is an extremely frustrating problem to have as I am very driven and I really want to be up and about and moving all the time, but I find that sometimes the fatigue and dizziness can be so crushing I am unable to work. I am delighted to see it explained on this website that these symptoms may be reversible. I desperately want my life back and particularly want relief from chronic depersonalisation that has gone on for years - it's as if I wasn't there for most of my life, an incredibly demotivating feeling as it takes out the reward of doing anything much at all if you don't' feel you're actually there to experience it. I have had trouble getting treatment for my problems. Psychlogists have refused to treat what they felt were neurological symptoms and neurologists have cleared me of any physical problem leaving me with only GPs and the medications they prescribe. They are trying to help, but the medications have never really done anything for me. I think I would be best off with CBT but I've been waiting nearly two years for an appointment for that. I had begun to feel rather hopeless about the whole thing and ready to throw in the towel and stop pushing myself, but this website has really motivated me to try again to catch the doctors' attention and get some help. I feel very optimistic now that I can return to health. Thank you so much for creating this resource.

John 17th April
I attended the Neurology dept today and the Doctor was great, he gave me this web page as a reference and 2 years of worry that i had some weird and wonderful health problems have been answered with an hour on the site, Pretty much all my symtoms are mentioned and with some major traumatic experiences happening in my life starting approx 2.5 years ago this all makes sense now, i wish i had known about this site at the beginning. Brilliant & thanks to the author

Lorraine 17th April
Hi, many thanks for this website as it is providing some help, I have recently been told I have neurological functional weakness. I had caught a nasty cold and blew my nose, this caused me to become really dizzy, light headed and almost faint, by the evening my face felt numb and droopy, the next day I couln't feel anything down my left side of my body, I was sent to the hospital for tests and a CT scan. I was initially told by the consultant that my scan was fine and there was nothing wrong, what I had was functional weakmess, given a leaflet and told the soon I think there is nothing wrong the sooner I will recover, he then returned and said that the radiologist had seen an abnormality (possible Pons Infarction) I was sent home with and told to take asprin, and an appointment would be made for and MRI, I had the MRI 12 days ago. (the consultant phoned today to say that he had seen my MRI and it is fine (I'm not sure if I believe him after the CT scan), anyway he has said that I have neurological Functional Weakness, he doesn't know how it happened or if I will improve, he asked if I havd seen my GP or had Physio (which I haven't as I hadn't been given a diagnosis until now, I have been home for almost a month not knowing what was wrong) My symptoms are that I still have numbness in the left side of my face arm and leg, my left eye struggles to focus and I can't tollerate light too well, I have very little grip and strenght in my left arm and hand and although I can walk well I find it difficult going up steps. when I have done a bit too much one day (like your sight suggests) I do struggle the next, I also have problems with stuttering and remebering words.I do find my present state really frustrating but I really want to be back to my old self, Many people including my consultant have said I am too young to have a stroke (i'm 40) and I have also had a number of people tell me that this is a virus or stress (I am a full time student in my final term, and have a young family) and maybe they are all right

I still do feel that my functional weaknes was brought on by blowing my nose. I just wish I new when I would get back to normal and be able to drive and do all the things I did before.And how I can prevent this from happening again.I has been really interesting reading everyones comments and the site is helpful,Good luck to everyone for a good recoveryLx

Fran 4th March
l have had very bad facial movements when l have attacks my mouth contorts with up to 20 different movements all with different noises for up to 8hrs, l start with a heavy feeling in my chest, pain in the top of my left arm ,chest palputations then violent shaking (l shake in my right hand &left ankle all the time) then my mouth starts, l am lucid throughout these attacks .Next my right arm &right leg lose all movement then after approx 30min l lose movement in my left leg too ,after about 7 to 8 hrs suddenly my mouth stops & then everything stops l am back to normal .l can go 1 day ,1 week or 2weeks inbetween & only have about 15min warning when l am starting so l have to be very carefull when l go out as l have to be able to get home . l have been to A&E several times & have been kept in twice but they have said not to bother going back to hospital as they can't do anything except just watch .l am now on tablets but have had 2 attacks while on them so l will have to see how l go on.

Rich 4th March 2012
Hi i was given this website back in August when i was diagnosed with Functional Disorder after a 2nd opinion, after having numerous problems with non epileptic seizures/shaking attacks & balance problems and vertigo, this all started back in January 2011, had MRI scan which was fine, kept having these fit/shaking type attacks before i got diagnosed and the Neurologist consultant in A&E at the time turn round and said "its all in your head theres nothing wrong with you" which i wasn't very happy with until i had the second opinion where i was diagnosed in 10 minutes after months of this going on, i read the website once i got back and it gave me understanding of what i was going through and reasuured me even more that i was not faking it or its in my head so im very grateful to this website for that!!I'm currently waiting for an appointment to see a Neuropsychologist to have my brain re-trained been waiting 3 months now after being sent to a standard psychologist who didnt know what brain retraining was after stating that to the Psychariatrist & Psychologist in an assessment meeting that brain retraining was what i needed, i felt let down by this and even being told by the Psychologist in the very first meeting " i don't know why your really here" then tried to blame my childhood and parents for the way i am now with my disorder, when it's due to Truama and was told this!I realy think that this should be addressed to all Psychologist & Psycharitrist departments so this does not happen to anyone else, i know the NHS isn't at best at the moment with the cut backs but im sure they would all benefit from a read from this website as it would give them some understanding into peoples symptoms etc.I really hope i get an appointment soon because it does really get you down, i have lost my job through this and im restricted to what i can do but thank you for giving the information you have given on this site, i look forward to seeing more in the future.

 

Belinda 13th January 2012

Thankyou for your website, the first real information out there that helps and makes me feel like less of a freak. I'm beyond the end of my tether after about four year of speech/stuttering/mute difficulties, hand issues where my hands do a painful 'claw thing', full body convulsions where i close up like a flower, dizzy spells, lots of falls, movement issues with weak legs/dragging feet/usless legs to the point of now having to drag myself around with totally unresponsive legs at times and using crutches for any moving now. I worked hard to go through university to become a teacher and planned a life of supporting my family only to become a burden on my loved ones with no real worth . Now my husband (happily I might add, he and my girls are great too) supports us all financially. As well as physically and doing most of the home chores, where as before we shared all chores etc equally. My girls help me alot where i see my place as to help them. I have felt so usless and alone and have become so sick of being passed along the medical roundabout to once again be treated as if im making it up. Thank goodness for the rare few who try to help like the two counsellors I have had Lisa and Angela, as well as a hypnotherapist Carol. I have a question please. When diagnosed i was told, and the only information I found ,said Conversion Disorder was short term, so I have felt like a failure when my symptoms have not only stayed but grown worse. Has anyone recovered. Most things I have read seem to be people accepting their conditions and living with it. Im starting to think I should do the same but dont want to give up on being normal again either. Do people recover? Has anyone out there recovered?

Editor: People certainly do recover from these illnesses. It is hard work and not everyone can recover. Its important not to feel guilty if it proves too difficult. Read the stories section for examples of people whose symptoms have improved. I personally find that when people get better they often dont want to think about it or write their story for the website - please let me know if you want to post your story on the 'Stories' section

Vicky 12th January 2012
Hello there. After going through a very lonely journey of a diagnosis of Functional Neurological disorder, i often look at your page for updates and infomation. I have had the unfortunate experience of ignorant consultants and they seem very unknowlegeable of this disorder. I have a few questions which i cannot get answers from any other resources so i really hope you can help. what is the diagnostic criteria for functional neurological disorder? Why does the medical profession know very little about it? Is this a genuine disorder or an umbrella term? And most importantly, is this a mental health illness or a neurologicl disorder? i think this website is good but does contra-indicate itself with the last question i have just asked. I do not have seizures, my symptoms have been consistent since i had influenza and my spine has a large thoratic curve due to muscle spasms. I have large masses on the back of my neck which has baffled my neurologist as nothing showed up on the MRIs. It has baffled him so much, he took the scans to a confrence for other neurologists to look at where no explanation was found. I am confident i do not have a disease such as multiple sclerosis or anything like that, but i really need answers for my above questions as it is impossible to get them from any resources, believe me, ive tried. If i cannot get answers here, i would appreciate it if you got back to me with somewhere i could please get some straight answers to my above questions. Thank you for your time
Editor: I have tried to answer these questions on the page 'In the mind?'. .

Emma 12th January 2012
I was involved in a car crash nearly four years ago. Since then I have been suffering from spasms. These spasms can last anything from a minute to half an hour. They sometimes just start for no reason. I can be lying in bed reading, watching television or washing dishes and I will just go into spasm. I wake my husband up during the night having a spasm sometimes without me even being aware. They mainly come on when I am touched on my neck or back - hence the reason why I was unable to have physiotherapy and had to stop having acupuncture. My husband has to be careful when he gives me a hug and even when I am lying in bed and he kisses me on the head or cheek a spasm can be triggered. I am unable to sit for any length of time because I start having pain and buring sensation and pins and needles in my left arm then restricted movement. If I continue sitting I get a funny sensation up my thoracic area and a spasm comes on. I am able to drive short distances because I have had the spasms so long now that my body knows when one is about to start. At the beginning I did not know and would have no warning so had to hand my driving licence back to the DVLA. I have had nearly every test under the sun but they all come back as negative. I have seen 5 different consultants at different hospitals both on the NHS and privately. I have been treated by consultants like I am something on the bottom of their shoe and have not been given the time of day. I am at a loss as to where to go from here. No one can help me. However it does help to look through this website and realise that I am not making it up and there is something wrong. I was initally off work for nine months and this time round have been off work three months. My spmtoms are not improving and I have been put on so much medication that its a wonder I do not rattle !! Ive been on Diazepam, Nortriptyline, Amytriptilyne, Tizanidine (which may be of some help), Tramadol, Pregablin, Diclofenac - and these are the ones I am able to recall straight away. Like other people I have been told it is down to anxiety but I know that this is not the case. My father died in 1999 in a car crash and I even had one consultant who said that the reasons I was getting the symptoms is because my dad died in a car crash !! I didnt dare tell him my parents were divorced incase he said it was because of this or that my rabbit died when I was 10 incase he said it was related to that. He obviously could not be bothered and came up with the first thing he thought of. I am currently trying to arrange a private consultation with a Neuro-Psychologist at the Spires Hospital in Birmingham who has been recommended and specialises in working with people who have been in RTA. I really hope that he can offer some assistance because I do not know how much longer my employers will allow me to keep my job with all my absences from work. Fingers crossed that this bloke in Birmingham can assist as I am seriously running low on options. If anyone has any recommendations or advice please respond or even if anyone knows of any support groups where other people with similar issues can talk to each other. If there isnt one could we try setting one up ourselves ?? Good luck to you all and I really hope that you get the support you require. Just reading this website makes me realise I am not the only person in the world experiencing these symptoms (Like some of the Drs I have seen try to make me believe) which does help.

Editor: There is now a facebook group you can join at
http://www.facebook.com/groups/322848047124/10150468944737125/?notif_t=group_activity
I am not part of this group but I hope its helpful

Lee 8th January 2012
i have been suffering these types of episodes for nearly 8 months now. My GP has been treating them with propanolol which i think is at the neurologist request @my local hospital as he thought the episodes were 'triggered' by anxiety. All other tests such as an MRI were normal so there is no sign of epilepsy. On reading the information provided on your website i think alot if not most of it co-incides with my experiences. Although i noticed there is no mention of 'tiggers' or the fact anxiety having an impact. i was wondering if this may be a factor or if i may have been wrongly digagnosed as the medication does show signs of improvement. Also i would like to know if there is anything else i could be doing to prevent the episodes as at one point the were very regular and had a huge impact on both my working and social life. thankyou for your time. kind regards

Editor: Anxiety is often very important in dissociative (non-epileptic) attacks. Some people notice a clear relationship between feeling anxious and having attacks. More commonly people do NOT notice such a clear relationship but do find that they are generally anxious between attacks, particularly about when the next attack is going to be and the consequences of the attack. Some people with dissociative (non-epileptic) attacks do not feel anxious at all at any time. I hope the pages on treatment of attacks (1 and 2) are of some help.

Shirley 4th January 2012
When my neurologist finally gave my illness a name I felt like kissing him! After multiple scans including a dat scan, mri scans and a cat scan all of which came back negative I began to think other people must be thinking I was making my multiple range of symptoms up. I knew I wasn't making it up. I am almost unable to walk due to a dragging leg and pain, trembling problems, not to mention dizziness and concentration and memory problems too. I really thought the neurologist had got it very wrong and I had some awful progressive disease. After reading this website I now know it can be reverseable so I am going to do whatever the doctors suggest might help. As I have been unable to work for nearly 2 years now I now feel more positive than I have for a long time. Thank you for taking the time to create this amazing website