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Sintomi neurologici funzionali e dissociativi: una guida per il paziente

 

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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

 

 

 

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In quanto medico, purtroppo, non posso essere responsabile di una chat room su questo sito.

Ci sono comunque varie pagine facebook e altri siti sui sintomi neurologici dissociativi e funzionali fondati da pazienti affetti da questo genere di problemi. Puoi trovarli ai seguenti indirizzi:

 

 

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

http://www.www.facebook.com/groups/110873699030722/

http://www.fndhope.org

 

Io non faccio parte di questi gruppi e non sono perciò responsabile del loro contenuto e dell'accuratezza delle informazioni in essi riportate

 

Dr Jon Stone

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