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Existují i jiné stránky facebooku a jiné stránky o funkčních a disociativních neurologických příznacích, které byly založeny pacienty s těmito příznaky.

Můžete je najít na

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

Nejsem členem těchto skupin a proto nejsou zodpovědný za jejich obsah, nicméně doufám, že mohou být užitečné.

Dr Jon Stone

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Předešlé komentáře

Mary 8th June 2012

any tips for those family/friends/partners who are trying to live with someone who has this? and who says they don't know who you are or what the words they are using actually mean? Is anyone else finding that a partner with this condition is completely self absorbed, unable to empathise or be interested in their other half in any meaningful way? I am in a situation where the person seems prepared to make any excuse in the book to avoid addressing this - is this a normal 'start' to dealing with this? Yours, dazed, confused and jolly sad

Bridget 8th June 2012
I am a mother of 3 and a wife. I had what we call the ‘Big Bang’ July of 2008 which is the start of my quest to find answers. I had difficulty walking, fatigue and balance problems for several weeks leading up to the Big Bang. As I look back though…I have had several random isolated involuntary movements through out my life. They were infrequent, therefore, I was able to ignore it and go about my life. Ignoring it is no longer an option. These involuntary movements are now a part of my life. In the last 4 years I have been to 5 separate hospitals and clinics, have seen more doctors than I can count, taken more tests than a ginny pig ever could imagine, relearned how to walk, given several diagnoses, tried over 10 different medications, and have come to one conclusion… If every Dr is taught the same basic medical philosophies I can go anywhere in the world and get the same result. Therefore, if I want a different result I must somehow change the world. Many are frustrated with the lack of understanding and effective treatment plans. I myself have chosen to channel that frustration into a pro-active approach. I have become part of clinical research studies and have also started a non-profit organization F.N.D. Hope. (fndhope.org) It is the first and only non-profit (for charity) patient ran support group. I would like to welcome any one to please join us as we unite around the world for support and better wellness. fndhope.org

Rita 6th June 2012
My functional neurological symptons started 3 months ago after I had a bad experience of an electric shock while using a passive exercise machine. I lost the power of my hands immediately when the muscle contracted and since then I have continuous tingling and numbness in my arms and experience nerves moving and tingling all over my body. My doctor didnt believe me and told me I was depressed or suffering from menopausal symptons. I was diagnosed by a Neurologist who gave me your website which I found it very informative and great comfort to see I wasnt imagining it. I have an appointment with a Physciatrist Saturday next and hope he can help me. I just couldnt understand my symptons which started immediately after the shock and seems to have disrupted my whole nervous system. The neurologist told me it will get better but will take a long time and gave me your website.

Cristina 31st May 2012
I have been researching my symptoms for years. This website describes all of my symptoms. I feel numbness, tention pain and sensory problems on my left side only.

Rob 8th May 2012
this website is spot on . i had been going in circles until last wednesday. i have hemiplegic migraines as well , and thought some of the issues ive still got were because of it or something had been missed. so with this diagnosis i can move away from not knowing and try to rehabilitate myself over time and over come my disablities caused by this ..

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.