Claire 22nd December 2010
Hi, My name is Claire and I was diagnosed with NEAD when i was 19yrs old and I am now 29 - I was 17 when i first started with "black-outs" and my GP put it down to hormones/Period problems etc. As 6 months went by it then developed into seizures - I have no recollection of what happened during them at all (Only what my family told me - Jerking limbs,Collapsing and rolling eyes) and to begin with I had no warning at all. It was really scary - I was working in a hospital at the time and had to go on long term sick as I was having anything from 5 fits a week to 5 fits per day. I went through a whole host of tests and backwards and forwards to A &E after particularly nasty episodes and injuries and was eventually diagnosed with epilepsy and given medication. However the medication didn't work - I then had a CT scan - Which came back normal and then an EEG - Again normal and I had now been in hospital a week. The Neurologist came and told me that there was no evidence of epilepsy and to stop the medication immediately and he had no idea what was going on as there was nothing medically wrong with me!! I felt like I'd been punched - Everyone looking at me as if I was mad and making it up - I don't think I've ever felt so vulnerable and alone. My family and friends were fantastic and still very supportive but I felt like I was letting everyone down but did'nt know how to stop it.The neurologist suggested a referral to a Psychatrist (I thought great - Just to prove I'm mad!!) but when i got there - he was brilliant!!! It was like he totally understood what was going on - he involved my family in treatment and made sure they understood this was not just something I was "putting on" and of course i finally got my diagnosis of NEAD. It felt wonderful just to know that I wasn't insane and this was a recognised problem. It took a while and some hard going sessions but eventually we got to where it had all started from (I was abused as a child by family friend) and with the help form the Psychatrist and my family and friends I got much better and in time even stopped fitting! I do realise how lucky I am and that not everyone is as fortunate as I have been and I hope that by writing this it wil help someone else who is going through a similar situation. I am now happily married with two children - The therapy has now stopped however I have open access should i need it - Websites like this are fantastic for bringing issues like this into focus - Most people have never even heard of NEAD and that is something that needs to change - More training for Neurologists and GP's would be a good start as their treatments have a lasting impact both physically and emotionally.
Paul 21st December 2010
You might like to include this link to a website that deals with Benign Fasciculation Syndrome. There is some very helpful information there whcih may help to put some peoples minds at rest, especially those who are concerned they may have ALS. http://www.nextination.com/aboutbfs/ It also has a forum for those who want to find support and know more.Best Wishes,Paul
Marie 19th December 2010
Just to let you know, I wrote my story on this site on 18th july 2010, I am still suffering, the neuro doctors have said their is nothing more they can do for me, that i have to resign myself to being disabled, get on with my life as best as you can,, ....................although I am finding it harder every day to keep my spirits up, .
I have recently waited three months to see a pain consultant. who basicallly said go away and deal with it as best you can, then to rub salt in the wound he contact my gp and said It was all in my head, and that my pain didnt exist!!!! He didn't even exam me or give me any other help!! My life has been hell, for the last 18 months, thinking I am going mental, and that I am some how doing this to myself, without idiot doctors, who make you feel as if your not worth even dealing with!! what is that all about!!!!!!! If it wasnt for my family, I would have given up before now, although sometime I do despair and cry myself to sleep every nite as to WHY ME!!!!
Although on a postive note I have been learning to drive with hand controls, as my legs are useless now, I am waiting for this snow to go away so I can have my assessment and get my independence back!! Ive got to move on with my life as it is now, I would like to say thank for this website, as it does comfort me that I am not on my own with this Functional neurological Disorder. a cruel thing, but not a illness as I am often told too!! Its not the doctors who have to deal with living day to day. they want to try it and see how it feels before they patronise us, treat us like idiots!!!!!
Gayle 16th December 2010
Thank you for such an informative website. I have been diagnosed with Functional Neurological Symptoms after two years of being told by consultants there was nothing wrong with me and making me believe I was doing it to myself. It was after being put under the care of my liasion psychiatrist, that I have been able to understand a bit more about what is happening to me. She suggested I check out this site when I mentioned I stil was unsure about the full extent of the disorder and felt I was the only person suffering in this way.
My symptoms manifest themselves in periodic 'crashes' where I suffer migraines for 4 or 5 days followed by weakness and unresponsiveness in my muscles from the neck down and difficulty responding to the world around me (almost like my brain has short circuited and forgets how to work with my muscles and society) then a gradual improvement for 4 or 5 weeks before I have another crash. I have Fixed Dystonia in my right hand and both ankles and am mainly confined to a wheeelchair. In the summer I spent 3 months in a rehab hospital and there learned how to retrain my brain to make my muscles respond appropriately. Now, physically I can recover from a crash in about 10 days to the point where I am able to walk using only one stick for short distances. I continue to work with my doctors to recognise and overcome the psychological short circuits that happen but at least now I recognise what it means when the veil descends over my mind and I am disconnected from the world around me.
The biggest change in my attitude towards the disorder, was being told that it wasn't my fault, I wasn't causing these things to happen to myself, it was something happening to me. Your analogy of software/hardware problems is incredibly apt. Once again thank you for such an informative, easily understood site. The only thing I haven't found on the site is why I should be more susceptible to infections during a 'crash'.
Jewell 11th November 2010
I was first diagnosed with a "conversion disorder" when I was 36. Then the neuro doc appologized and said that diagnosis was a mistake, that I had Myoclonic Epilepsy. Then later, an in-hospital stay EEG at a telemetry unit, with electrodes implanted into my jaw disproved the Epilepsy diagnosis. Then I saw another neuro doc and the diagnoses was "True Myoclonus", then another neurologist examined me and laughed and said "I don't know what this is, but I think its something psychological". (I on the other hand wasn't laughing) Then another doctor brought a new diagnosis...Dystonia. I thought...this is IT! And felt comfortable with this new diagnosis. Then I went to see the Chief of Human Motor Control at the National Institute of Health here in the U.S. and was seen by him and a team of 15 doctors. Their take on it? Psychogenic Movement Disorder or Functional Movement Disorder. My heart sank..."oh no not that" the tears spilled down my face as I tried to get my head around it.
Now in my early fifties, I had spent almost 2 decades of my life suffereing in digagnostic limbo only to discover that probably the most accurate diagnosis I have received is also one that evokes a sense of embarassment. The doctor assigned to me was so kind and adept at explaining things and I find that helped to ease some of my frustration over it. She said "we don't know why, but there are parts of your brain that have stopped communicating with other parts of your brain...we don't have a way to show it yet, but we know that there is something wrong in the brain. The good news is that your prognosis is very good and that we believe you are going to get better. We are going to be doing a study on pyschogenic movement disorders in the hopes of finding a way to be able to show what is going on in the brain." It may be 3 to 6 months untill it begins, but I have been chosen to participate in this cutting edge study. Although as I said, I am a bit baffled at this latest news and initially felt very depressed about it, but l will try !
to focus on gaining knowledge of my disorder so that I may improve the quality of my life. This site has been highly recommended by my doctor at NIH.