機能性/解離性による神経症状について:患者ガイド

Hemi

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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

Nikki 30th December 2011
This site has serious epistemological issues.I wonder what definition you are using for “neurological disease”, in order to make such absolute statements as “as does not have a neurological disease”?Did you actually mean to say, “does not have a neurological disease that observers are able to acquire knowledge of using currently available technology”? Which is a rather different statement.Frankly, as someone with a degree specialising in scientific epistemology, I despair of many medics and other “accidental scientists”. They seem completely unaware of the difference between “X is true” and “I can observe X”

EDITOR comment: I agree that medical concepts of diseases are very slippery and especially troublesome when it comes to defining neurological and psychological conditions which all arise from the brain. If you read through the site you will see that 'neurological disease' is shorthand for "a condition that neurologists would recognise as being due to a disease of the nervous system".Whilst I would personally like to do away with 370 years of Cartesian dualism , like it or not this is how most neurologists (and people in general) often think. The website emphasises that the symptoms are arising from the nervous system (see page 'in the mind?') and are genuine.

Becky 9th December 2011
Hi. would like to share my story. I have a diagnosis of syringomyelia and suffer from on and off leg weakness, which neuros say is not linked to my condition. I occasionally become completley paralysed, and most of the time, hospitalized for a long period of time. I have been seen by neuro surgeons, neuro physcologists and neurologists to no avail. I am still battling on with no clear diagnosis of my leg weakness, and reading your page has made me see i am not alone! I take lots of very strong opiots (gabapentin, fentanyl, oxycontin, amitryptiline etc etc) for my severe back pain, but i am still battling on to get a diagnosis for my weakness. Sometimes felling like i am not believed, drives me mad!!Would love to share my story with others and its good to hear others are fighting with the same issue as me.Becky x

Carolyn 24th November 2011
Thankyou so much for this website. I have had unexplained neurological symptoms for 5 years now. They are so severe that I cannot work anymore. I was very scared at first and being a health professional a little bit of knowledge was even more scary. I havent been officially diagnosed with this illness, but I know that my neurologist has been saying to me all along that he thinks a large part of it is psychological. The neurologists I have met in emergency told me that in even more unsympathetic terms. Of course I was very defensive because the symptoms are so real and disabling.
Confident now that the worst has been ruled out I found your website. It is so infomative, respectful and gentle, that I find myself able to step back and look at these issues with curiousity and hope. I do have a background of long-term abuse. I will be starting psychotherapy soon. I am grateful for my neurologists patience, but wish he had given this sort of information. I am so glad I am not alone. Best wishes to all of the others and good luck in your own journeys

Haz, 21st November 2011
I fell ill 3 months ago, and got rushed into hospital with stroke like symptoms. After many tests, and toing and froing from the doctors and hospital, I finally got told today that it is not a stroke, a brain tumour or ms, but they are unsure what it is. I was given this link by the neurologist but still feel like I am in the dark. I have read through every page of this website, and have tried to take in as much as possible in my current situation, but just feel like I have a lot of unanswered questions and do not want to go back to a doctor as I keep being told that I am stressed, when I feel the only thing that is stressing me out is the condition that I seem to have developed, what seems like overnight. I want to do anything and everything I can to get better as I am an army wife, live away from my family and am usually on my own as my husband has to go away alot. I just feel like I am going crazy with the not knowing. I keep seeing that people suffer for years and the thought of this is making me worry.The website itself does help in someways but in others leaves me feeling worse?!?!?!?!

Web Author: Dear Haz, functional symptoms can be difficult to overcome but many people do manage to do so. I hope the information on treatment helps you.

Jo. 19th November 2011
I dont know whether It might interest others, but since this website was born some of us have joined together to support each other in a facebook group it is. The link is here https://www.facebook.com/groups/322848047124/10150468944737125/?notif_t=group_activity

Lesley 18th November 2011
I am a clinical psychologist and have found this information very helpful -thank you!

Gaynor 17th November 2011
Hi, I wrote earlier this year about my neurological syndrome, it seems that my two sisters also have this, to varying degrees, I am still very clumsy, and have days when I cannot leave my bed. I feel on top of the world if I can leave my walking stick at home when I go out. The sad thing is that I only go out about twice a week. I try to get by without the equipment social services have given me, but unfortunately I end up being stuck in a position I cant get out of, which brings laughs with tears not far behind. On the plus side, I am not so depressed about it, and have got over the phase where I updated my facebook with all the negative news, now I barely go on there, to a degree wallowing in misery didn't help me at all. When frustration hits I come back here to lift me out of the 'I am going nuts' phase I go through. These neurological symptoms are real and debilitating, but the doctors dont have a path of medicine to follow with us like somebody with multiple sclerosis who suffers the same symptoms, its a case of treat the symptom, treat the symptom, treat the problem the medication has created, try again. . . . I am now on an even keel, with pain being managed most of the time, tiredness still hits when it feels like. Luckily for me Lyrica has helped me a great deal regarding the deep muscular pain I was having. I sleep 12 hours, but find it difficult to get to sleep. I have a good GP who goes more than the extra mile for me. I count myself one of the lucky ones, and thank you so much for this website, its helped me through the last six months.

Trudy 12th November 2011
I first wrote on this site in Oct 2010 (click here to read original story), after suffering seizures following a road traffic accident back in Jan 09, i am still suffering with non-epleptic seizures on a daily basis, some very mild others extremley severe, but i am learning to cope with them through therapy and a better understanding of myself.

No one can tell me how long they will continue and i now accept them as part of my life. I am still unable to return to work and have been told that my choice of occupation will have to change (credit controller) as stress and anxiety are the main factor in my condition. i recently started some volunteer work helping look after retired and abused horses one day a week, it brings some meaning to my life and makes me feel worth while. I have no idea what life has in store for me but i intend to grab it with both hands. My seizures happen on a daily basis and even though you cannot shrug them off i accept them as being part of me.

I want to thank all the people who are out there trying to help people like me with this condition, who are trying to understand what we go through every single day, who listen to what we are saying and believe the severity of the condition. Without this help alot of us would have probably given up. I hope everyone who has posted their stories on this site find the answers they need to aid their recovery and no matter what dont ever give up.Thank you

Paula 9th November 2011
Hi for 3 years i have been having what i can only describe as funny turns , I get this feeling that i am sinking into the ground i can here and see what is going on around me but cannot react or reply i feel sick and dizzy and afterwards i am tiered and feel emotional some turns are worse than others is there anyone going through the same thing as myself .

Angel Warrior 9th November 2011
WOW this is the most accurate and helpful website i have come across. I have battled 6 years with this condition and set up pages on facebook etc, to try and help people understand but no one seems to have a clue :/THANK YOU SO MUCH FOR THIS WEBSITE IT'S SUCH A BREAK THROUGH FOR THIS CONDITION. I think that every other site has not given people any real hope or understanding and makes the more feel like it is their fault, but you break everything down perfectly,
http://www.facebook.com/nonepileptic.seizures; http://www.facebook.com/groups/2483163487/;
http://www.facebook.com/groups/275210208531/

Robbie 9th November 2011
Firstly, I would like to state that I have found this website very informative and refreshing considering the widespread misunderstanding of this condition. I myself have suffered from chronic dissasociation for 10 years now and have vested much time and interest in seeing different doctors and visiting 'health establishments' in search of treatment, understanding and ultimately find a cure. After seeing a very good neurologist recently it has occured to me that searching for answers in medicine is really not of much use as the condition is little understood and awaiting this understanding may have one waiting long past the grave. Instead, i fear the way to progress is to some degree down to ones willingness to accept and live with the condition, this is just 'my cross to bear'.I do still hope however that understanding and progression in this field does continue as said first hand it is an incredibly overwhelming, frightening and 'numbing' condition that greatly affects one quality of life and whilst may not be degenerative or damaging to ones cognitive or physical abilties, it makes it find it very difficult to enjoy or truly interact with life, loved ones and ones surroundings.Final thought: Learning to live with these symptoms is possible, I am an example of that and be it that I have experienced a more severe, chronic depersonalisation for a decade, I think I am in an adequate position to make this assumption. The problem may not leave, may not fade, however your resilience and attitude to the problem can change.

Kerry-Ann 15th October 2011
My story is below. i have set up a blog about functional weakness. its really about how i am dealing with it from day to day and to try give others a little helping hand too. i have found your site amazing! my blog is myfunctionalweakness.wordpress.com

Kerry-Ann 28th September 2011
Hi i posted a comment a few months ago, i have functional weakness. i have spasms where my head twitches to the left, when they get violent my left arm and leg also twitch. i have started seeing a physio therapist. i have got a bit worse since i wrote last. i cant walk far and need the use of a wheelchair if i go out, i get very tired easily. it is very frustrating because i want to do the things i was able to do before, but my left side wont do as its told. i am still as positive as before and pray it will go away completely, but its been 10 months now and its not getting much better so my aim now is to try and control it. this being my point in sending another feed back.

i have found a way of stopping my spasms when they come on. i cant stop them coming on, but i have found a way to stop them. when i have a spasm my left eye is closed and i cant open it, so with my right hand i open my eyelid and focus on something around me. which within a few minutes the spasm has stopped. i have tried this 3 times now when having a spasm, and it has worked everytime. its all down to distraction i think. i have a lot to learn about controlling this, but it does start to show that it can be done. i have the view that i might not be able to move my left side and at times i look like im having a stroke, but i have the power to learn and control this and not let it take over my life. if you put your brain to work slightly different to the way it used to work, im sure in time functional weakness can be controlled. i still see a neurologist. im due to see him in january unless things get worse. i do think however im so positive about it because of my support team i have around me. i get asked from time to time how i can be so positive, that they couldn't be like me, but if you are down and let it take over where will that lead you~? plus i do say that im sure there are people out there worse than me, im still alive and have fight in me to win this war that my body is fighting.so if anyone out there thinks its not going to get any better, i just want to say it will, and if you keep positive and ask for the help you need,not just sit there without asking for help it can get easier. i have a traffic light system where green is im ok, amber im getting tired and red im bad. i have recently been giving two other lights from my physio as i tend to push myself a too far at times, so my system now goes green,blue,amber,purple,red. my physio said i tend to go from green straight to purple and knock on reds door. but its just my brain forgets that it cant do what it used to do before. im sure it will one day.thank you for this site.its been very helpful.