Symptômes des troubles neurologiques fonctionnels et de conversion : un guide pour les patients - Français

Hemi

En tant que médecin je ne peux malheureusement pas m'occuper d'un forum sur ce site.
Il existe cependant diverses pages sur facebook et d'autres sites à propos des symptômes neurologiques fonctionnels et dissociatifs, qui ont été créées par des patients ayant ces symptômes. Vous pouvez y accéder aux adresses suivantes:

http://www.facebook.com/groups/322848047124/10150468944737125/?notif_t=group_activity
http://www.www.facebook.com/groups/110873699030722/
http://www.fndhope.org

Je ne fais pas partie de ces groupes et je ne suis donc pas responsable de leur contenu ou de leur précision et des informations qu'ils contiennent.

Dr Jon Stone

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Rachael (UK) 18th October 2012

Thankyou is all I can say....i have spent most of this afternoon reading every piece of information on this site after being given the address by my neurologist today.....i cried and cried...it was like finally someone knows what its like to be me. That its not all in my head that there are reasons as to why certain things dont function for me, why i have certain disabilities. Of course i can not say for certain if functional/dissociative sysmptoms are the cause of my problems as i am awaiting to see a Neuropsychologist/psychiatrist to 'confirm' my neurologists suspisions. This site and the information in it has been invaluable in giving me an understanding that although no clear neurological disorder has been diagnosed (awaiting brain scan), that there may be a reason as to why my body is behaving in this way...thankyou

Rachael 13th October 2012
Our daughter had an onset of "Pain Amplification Syndrome" or Functional Nervous Disorder, with toes-to-scalp chronic pain and gait disfunction, when she was 14; three weeks after falling on her head and shoulder and braking her collar bone during a dance rehearsal. She was correctly diagnosed by the chief of rheumatology at Children's Hospital in the USA, and she has been in two therapeutic hospital programs for a total of 6 weeks. Now 18 months later she is in a wheelchair to get around her large school. We know the wheelchair is both a hindrance to physical recovery, and an important aide to her independence as a happy, busy student. She has seen multiple pediatric neurologists and a psychiatrist, and has tried biofeedback, hypnosis, talk therapy, myofacial massage, physical therapy, pool therapy, accupuncture, etc. - all with no measurable effects. She experiences chronic back pain, numbness and tingling below the waist, slow stiff gait and sudden knee buckling. She says the pain feels like it is in her bones, muscles and skin. Her ribs can hurt so much that deep breaths are very painful. Sometimes after exercise, her legs and toes jerk and tremor for hours, and refuse to hold her upright. She must be particularly careful on stairs (she goes up and down seated) and in the shower (she uses a special seat). She takes a neuropathic painkiller which has helped quite a lot with the chronic pain and tenderness in her arms and shoulders. She is not depressed or anxious, and is an honors student with many good friends. When doctors suggested last year that her symptoms would go away with the correct psychiatric treatment, she was offended and desperate for months, and we looked for other answers. She now accepts that she may get better with appropriate levels of aerobic exercise, but that she will have to be very patient and persevere through the pain and other symptoms, perhaps for many years. We are seeing a new neurologist next week; I will direct him to your website, which is very informative and seems to describe her condition exactly. Thank you!

Sally 10th October 2012
I am so glad that I have been alerted to the existence of this guide. If only I had known about it a few years ago when my symptoms first struck. I feel so reassured. Thank you

Kerry Ann 30th September 2012
hi iv wrote a few times, i just thought id send an update. since we last emailed i have gotten worse. it has now went to the left side of my nervous system. however i am undergoing hypnosis which is going very well indeed!I know some people think of hypnosis and laugh but its nothing like on tv. when my symptoms are at there worst now i get paralized from the neck down my laft side face stll droops and my speech is still effected. but I am positive i will overcome this. yes there could be flare ups in the future but i have two amazing guys who help me with the hypnosis.

Ruth 27th September 2012
I learnt today that I have Functional Weakness I feel that a weight has gone off my shoulders...the neurologist who confirmed the diagnoses today told me that it was a complex issue which could easily be more understood on reading the information on this brilliant site. I was initially told that I had had a stroke then it was thought a kinked artery - its such a relief to know that it is not my imagination that makes me walk to the right,, fall down, feel that I am chocking, blurred vision, stammer and forgetting my words mid sentence.....its been a long haul reaching this diagnosis but such a relief.

Lily 11th September 2012
After finding this website i instantly burt in to tears, i think its going to be a great help. im 21 and for the past 18 months ive been suffering with really painfull migranes, spaced out and dizziness which is constant and long winded panic attacks. i woke up one day and i couldnt stand due to feeling so dizzy what started off as vertigo is now a mystery. ive had all sorts of medication and physio and they cant seem to work out whats wrong. Finding this website though has given me a few needed ideas to try out to see wwhats going on. Thank you xxx

Anonymous 24th August 2012 from USA
I want to thank you for this wonderful website - it has helped shed some light and gain some understanding for my brother who is suffering with chronic pain. My brother has been struggling with chronic pain for a little over a year visiting multiple doctors and becoming increasingly frustratedand depressed due to getting no answers or solutions. We sat here together and went over the information and he found the most validation of his symptoms and complaints in the information you have provided on complex regional pain and its ties to the malfunctioning of the brain.

Carol 9th August 2012
hi I am carol a 48 year old lady who a few years ago woke up and couldn’t move my legs. i got back to work but over the month i noticed i was getting worse with lots of pain in my left leg and my foot was starting to drag. I went to the doctor who told me i had sciatica and pain like id never known but every test i had came back clear. i thought i was going of my head i got so depressed i wouldnt come out of the house. I was starting to take episodes of child-like behaviour although i dont remember these my son was there with me i couldnt do anything i was so scared. Then i change doctors and after a few months he sent me to see a neurologist and was so glad when he told me that after all those years someone know what i was talking about. He told me i wasn’t going mad and gave me advice. im not better yet but at last there are things i can do to work with. most of all i had people starting to help me. i have a life now thanks to my doctors and my son tom

Sue 8th August 2012
My neurologist told me that I have Functional disorder last night and said to look at this site as it could tell me more than he could As I was driving home I was quite upset thinking all I have been given is a website address but once I looked at this site I was amazed it described all my symptons it could just have been talking about me this is such a relief as I was convinced I had MS. This has given me real hope, what I would like to do now is find a support group in my area or start one if there is not one already.

Lissa 7th August 2012
OMG I'm sat here in tears at the relief of finding a webpage that actually understands and explains what I have been going through for the last year and a half. I was admitted to hospital in May of last year with " a stroke" after I went completely numb down my left side with face droop, and I could'nt remember my name, D.O.B etc which after having a CT scan the Drs told myself and my whole family that I had had a Lacunar Stroke. 4 days after my CT I had an MRI bearing in mind all this time I had been laying helpless in a hospital bed having to be hoisted to get out of bed as I still could'nt move my left side, I was wheeled down to physio and told to get out of the chair and walk and man handled round the ward. I was terrified and in tears but the physio just said see the consultant. Later that day the cons. came and said they could not see any evidence of a stroke go home and get my GP to send me to a psychologist.

Since then I have battled with every professional I could get to see to demand answers as I was just ignored after coming out of the hospital, no follow up, no explanation. Finally after telling my Gp I was suicidal he sent me to a neurologist who sat me down and calmly and sympathetically explained the diagnosis of Functional symptoms. It was a shock but eventually I understood what he was saying the only problem left is my body still thinks I had a stroke and my left hand is still pretty weak and I still walk with a limp but the worse thing is my memory as I still forget things and words and can stutter a bit sometimes and it has left me with IBS. At least I'm not dying or seriously ill but now every time I do feel poorly I tend to put of going to my GP as I feel everytime I go I am being thought of as time wasting. Thank you again for making me feel I am not alone and going mad :)

Tina 8th July 2012
I am a physitherapsit I have specialised in chonic neurological conditions for over 20 years, with an interest in complex conditions and CFS/ME. This web site is one of the most informative and easy to navigate information sources I have come across. I would like to say thank you for the information you have provided and I will be passing on the detaials to my collegues and clients

Maureen 2nd July 2012
After migraine attacks from age 11 now at age 57 i have been suffering from almost daily neurological symtoms for past 10 years including sensory changes on one or both sides, it seems to have evolved from classic migraine to a whole new ball game. I have had 2 MRI scans which showed nothing significant and were classed as normal and been on lots of meds, i am now on just propranolol which does nothing really. I have to deal with this most days of my life, sometimes i worry i am going to have a stroke and get very down. I have not had an attack where i have totally lost control of my muscles it is just a weird numb sort of feeling like when an anaesthitic is wearing off, it affects my little finger, tongue my forearm my calf and sometimes my foot, sometimes separately sometimes altogether (which is the scariest) I would love to correspond with people who know what i am going through, there is nothing worse than thinking you are the only one with some weird disorder or that no-one knows what is wrong with you. After reading this site i have hope ,and that is something i thought i would never have regarding this. Thanks so much whoever is responsible and thanks to everyone who has posted their symptoms/experiences. I am happy to be contacted at any time, i have many more things i would like to discuss, it is difficult to put down in words how bad i have been feeling and how weird some of these symptoms are. The nature of my work does not help either I work from home for a call centre for a very busy organisation

Christine 26th June 2012
I have been searching for answers for 7 and a half years. I have only just found your website and the more I read the more I cried. Finally something I can relate too. My symptoms started with a buzzing sensation in my lower legs. It slowly progressed up my body until I have the sensation all over, 24--7. There is nothing I can take or do to get any relief, my muscles are extremely tender. I can physically do most things, so to doctors, family and friends there's nothing wrong with me. (all in my head). The first 3 years I was very suicidal. I have seen 3 neurologists, been to 6 different GPs, had MRIs, CAT scans, tried accupuncture, been to Naturopath. Spent literally thousands of $$$ of specialists to no avail. I got to the stage where I knew I had to push through the discomfort and pain, keep smiley and generally pretend to all nothing was wrong. But sometimes I hit a brick wall and fall into a deep depressed state, eventually pulling myself out of it and go back smiling!Tomorrow I have a doctors appt where I will attempt to get him to perhaps read some of this web site if not all and hopefully .....hopefully we can work out what the next move will be. Thank you so much

Marggie 22nd June 2012
Well I've just been diagnosed. I truly hope after being told 40 years ago I have multiple sclerosis that I can get my life back. Thanks to this page and stories there is light at the end of the tunnel