Funktionella och dissociativa neurologiska symptom - en patientguide


More feedback - page 2

Christina 2010.1.5

Hi Mandy, Hi phh. It is good to have a forum to share these difficult times and these very difficult symtoms. Just to add fuel to the fire so to speak, I am being taken to a tribunal by the DWP, because they think I can work and letters of support for my case from the neurologist, occupational health and my doctor saying I can't work, doesn't seem to be helping. I know, that the physical and mental effort of getting to 'my hearing' will result in at least 2 days when I will not be able to leave the house, due to chronic fatigue. In addition (and Happy New Year) on New Year's Eve, I received a letter from my school, asking me to attend a meeting to discuss my future. At the end of the letter, they warned that if there were no way forward, I would receive a warning due to absence or have my contract terminated due to poor attendence. I find it hard to belive that following a fall at that school which was due to a poorly maintained canteen floor, they have the right to put this extra pressure on me at a time when I need, support, understanding and most of all time. I feel exhausted just thinking about what I have to deal with in 2010, I think any able bodied person would, so how am I expected to improve with all this pressure on me!!!!

Keith 201.1.2
Hi phh there is no eurika moment as you have said mobility was a real issue for me but with intervention of intense physio each day gets better and this website is very informative. I couldnt get my head round what was happening to me after 18 months of chronic pain headaches tremors and severe jerking of the right hand side of my body until i saw advanced intervention services who gave me this website and sat down and explained that the brain is sending out scrambled messages. Now i know what the issue is i am trying to rebuild my life with this illness. I am on week 3 of my physio exercises and have had 2 major set backs when the body has said enough is enough and yesterday the pain was so bad that the right hand side was jerking along with my back so today i have to take it easy and gently increase the exercises again. I am 38 year old male who has worked hard all my life and have been off since august this year. When your are used to walking all day and being on your feet to have to retrain the brain to do all the simple basics like walking with a stick then attempting even a small incline which is frustrating to think you could this with your eyes shut. So the next day i tackled the incline again and didnt have to stop. As others have said you do feel like a freak as no one or very little people understand that our symptons are very very real but i ve found this website so helpful. Chase your gp or consultant for physio as again ive been lucky with the physio that i have who has used this website and understands the reality of my situation. They are working closely to get me on the move again. Also to all others, fight for dla and a blue badge to help you get out about and not trapped in the house Keith

phh 2009.12.26
I`m not making any progress as I still haven`t got a clear understanding what is happening. No one is explaining what is going on,what I can do to help. Questions on activity levels are answered in riddles- I think I`m meant to have a eurika moment when it all falls into place. I need someone to work alongside me to understand what I have to do in a day. I can`t cut out anymore.What I want to do I can`t and what I can I don`t want to. I am at the stage I can`t take anymore. My mobility and ability are declining there is no let up. Who can help?

Mandy 2009.12.15
Here, Here, Christina, Ihave left the message just below you but had to write again to say how much your story is just like mine. myself and my husband have also had to put our house up for sale since I could no longer work or function properly and I have to have care 24 hours aday. Why would we want to do this to ourselves, which it seems some people think we do? I have recently been told by the benefits people that i do not have an illness and have been put in the' back to work' group. I have to overcome the barriers that are preventing me from working apparently, I wish it were that simple. I did not want to lose my job, and effectively my life, but the benefit people in their ivory towers seem to think I did. So, you not only have the stresses of a medical profession to take you seriously . but also the benefit people who do not recognise the illness or its severity

Christina 2009.12.3
I sometimes think we are dealing with the stresses of the medical profession and their lack of funding when diagonosed with functional neurological syndrome! Its not that I don't believe it (I do) and I find this website helpful, its that I can't believe the lack of support for people with this condition. I am going to say about myself that, following a fall in October 2008, when I hit my hip and the right side of my head, I have been suffering from FND with chronic fatigue and chronic back pain. Not imagined real, as real as the fact that I have lost my house because I cannot work and could not therefore pay the mortgage and as real as the fact that I am going to lose my job, because I am not well enough to work. But I am not depressed (and I know that) because I have time, time to enjoy all of the things that this condition will allow me to indulge in. As I am told that conventional medicine cannot help me, then how can I fund expensive alternative courses of action !
 (benefits of £60 per week, don't support this). If the medical profession was less stressed and better funded, then perhaps following this diagnosis, I could start to enjoy some NHS funded treatment - even some painkillers that don't hurt my tummy, or time with someone that understands and isn't there to 'read my mind.' This is a truly fasinating area of medicine that even the experts don't understand, why doesn't someone fund someone to indulge their interest in the subject, as I have been allowed to indulge my interests!

Mandy 2009.11.25
I discovered this site by accident too, just like a lot of other people. I have also had lots of negative feedback, mainly from neurologists, one of which practically said outright that he did not believe I was having non epileptic seizures and said that perhaps i should refer to them as 'episodes' so as not to confuse the medical profession in future. There were various students and nurses standing around my bed at this point and I have never felt so humiliated and patronised. I have been diagnosed with FMD but the last 15 months of my life have been hell. Some days it takes me all my time to get out of bed, and a few months ago I was having 4 or 5 of the 'episodes' a day. I really wish that there was more understanding about these problems by doctors out there and we were treated with the same respect and had the same support network as those with 'recognised' illnesses. My neurologist says that he will still keep seeing me (every 6 months) and believes that I have fmd, but I still feel slightly patronised by him and come away feeling more frustrated than before I saw him. Having said that, he has referred me to a psychiatric unit that deals with my illness, but it all seems rather tedious going and I still cant help feeling that I am being treated more like a psychiatric patient, which is not what I want, with all the in depth discussions about my life etc.

Nina 2009.11.16
I have today been for a chat with my Psychiatrist, who thankfully has given me your website, I have had Epilepsy for 48 years and last year I was diagnosed with Non Epileptic Activity Disorder too, I have had difficulty understanding and coming to terms with this extra diagnosis, but I am trying so hard to manage it. This is the best website I have found and the most informative. I have read with interest what people have shared and I can relate to many of feelings. I feel sure that given this information will help me and others to understand more which we need to do to stop these episodes happening.

Sarah 2009.11.12
My current diagnosis is CFS with possible psychosomatic symptoms. I have seen neurologists. a psychiatrist, a neuropsychiatrist, ME psychologist. No-one has ever talked to me about which symptoms are psychosomatic or how to get better. I have spasms in my digits (fingers and toes), my hands are at times claw like, my limbs flick, my fingers and toes move on their own, I have spasms in muscles near my eye and visual snow. No-one seems to understand what I mean about the visual snow.To my mind these symptoms came on because no-one would believe me about the CFS. I had looking back a viral infection accompanied by swollen gland s headaches , fatigue after exercise. I asked one neuro about dystonia, he said no. I can't magic up the spasms on cue . I have shown my moving digits and tremors to some of the medical professionals. I am trying to tackle the CFS with antidepressants, pacing and I've asked for CBT. I want to tackle the psychosomatic side of my illness . I would love to talk to an understanding neuro but my experiences have been negative. No-one has ever mentioned this website to me, I found it by accident.

Angie 2009.11.4
I have found someone who believes me today and pointed me to this site I wish I had found it before! I have back and joint problems, X rays show lots of wear and tear, but it did not explain the weakness, altered sensation in my left side as well as my foot dragging, falls and a pain in my head for the last 3 months all my problems started 5 years ago after the birth of my son. One doctor even put “medically unexplained symptoms and I agree that there is a degree of significant overlay” basically I was putting it on!!!This site has help expand on what the doctor has told me today and I am please that it explains things very well and wish other doctors would read this and be more understand to people who have these kinds of problems as a lot of people would not feel alone.

Olivia 2009.10.29
I have been suffering with both localised and general seizures for over 2 years now. I have received no treatment and no support from neurologists. I have now been referred to a psychiatric service but will have to wait a minimum of 12 months to be seen. I feel that this problem needs to be more thoroughly publicised. People such as myself have to put vital parts of their lives on hold for years at a time. Due to the severity of my seizures I am unable to drive and my education has suffered. People such as us deserve so much better than we get from the NHS. I have been left feeling alienated and alone. One medical student even told me that i must have epilepsy as dissociative seizures were only found in people with mental disabilities and learning difficulties. At the beginning of my illness i was admitted to hospital and was told that I was dying. I was 18 years old and terrified. A week later I was discharged with no explanation of what was happening. I hope that nobody else is ever subjected to the abysmal treatment that I have received. I am still waiting for a definitive diagnosis of my illness. I would like to thank the author for explaining these problems in an easy to understand format, and for assuring people in this situation that we are not mad and should not feel ashamed of our illnesses.

Jill 2009.10.25
Thank you so much for the great information on this website. I was diagnosed with functional movement disorder after a year of symptoms. I finally went to the University of Miami Movement Disorder Clinic and my neurologist there gave me this website so I could better understand the disorder and cope with it. I have found that it does help to seek psychotherapy to deal with the symptoms and confront it head on. Thank you again for all of the information on this website. It has helped me understand what I am going through. I would also recommend forwarding this website to family members so they can better understand also

John 2009. 10.14
My Doctor saw me today and recommended this website. Having read Ian's story I feel I am no longer alone after a pretty miserable 2 years. Keep up this invaluable work! I am about to embark on a scary journey to full health but a journey I am going to be in charge of.