Functional Neurological Disorder (FND) : a patient's guide
including Functional/Dissociative (non-epileptic) Seizures, Functional Movement Disorder and other functional symptoms
More Feedback Page 5
Yasmin 17th January 2011
Hi there . I'm Yasmin and I have just found out from the hospital that I have got Dissociative Seizures and I am only 12 and i have been known to faint quite a few times in my life but now it seems to be happening nearly around everyday ! The hospital knew that this was not normall and did lots of tests on me and couldn't find anything and just on friday last week the consultant gave me and my mum and dad the news . I have now been put on a reduced time table at school because of this . My mum , was looking around the internet to see if there was anything she needed to know and luckily she found this website ! Nearly everything that is said on the " symptoms page " I have expirienced and now it is really great to know that I am not on my own and that I can be treated ! This website has definately been great and interesting to look at and I am realy happy that my mum found it . Thank You !
Angie 10th January 2011
Hi there!I just want to say thankyou to all of you for posting your stories. I have been diagnosed with functional disorder, following years of terrifying neurological problems, In 2004 I had a varicous vein removed. Unfortunately a few days after the operation I got an infection. I was at home and woke one morning to find little feeling in my right foot. I made an appointment as the loss of feeling progressed and the pain increased in my infected area. By the time I got to see my GP I had lost sensation in both of my legs and it was rising. I was sent to hospital, where they kept me in. I had neurologists testing me and has scans ran. All proved normal on the MRI, so after 10 days I was sent home after being told I was anxious!. I had little sensation and still had the open infected wound. I struggled as things got worse. I was sent back to neurology again, hospitalised and more tests and scans were done. I was now suffereing with excruciating headaches which had been diagnosed as migraines. In fact I has lost vision in my right eye. They could not find what was wrong. I had an EEG done, but this was also normal. I had to go for a lumbar puncture. As this proved normal, the consultant yet again, put it down to anxiety and migraines. Things got worse. I started to suffer with severe prolonged migraines and sensation loss in my right side (mostly my right leg). On a routine check at the hospital I was told another lumbar puncture was needed. This was done, but I ended back in hospital in excruciating pain and still no sensation in my legs. I couldn't walk properly and to make things worse I was informed I was leaking spinal fluid. Hence I was in hospital for this. I left none the wiser after I had recovered. I continued to have relapses and trudged to the hospital feeling 'what's the point, nobody believes me anyway' for my routine appointments. By now I was on a cocktail of medication and felt like a zombie. I was a shadow of my former self. My GP had put me on beta blockers for my migraines and there was more.
During my last consultation with my Neurologist I was informed that there was an acknowledgement of early degenerative spine and nerve damage. I was told that I was to be put on more tablets. Throughout this I had had no real explanation for the route cause. For months I got worse and even started having memory loss and loss of sensation in other parts of my body. My vision was terrible and walking was becoming a nightmare. I was so scared and believed that I was going insane! My work mates knew things were getting worse. I would have attacks that made me feel as if I was spaced out and my words were coming out all jumbled up. I felt so stupid all the time. plus my attendance was shocking. I was so determined to beat this, but nobody understood- at least I thought.... I was referred to a different neurologist. I was diagnosed with Functional Neurological disorder. He was brilliant and explained everything, assuring me I am not mad. I felt positive and by my next appointment was feeling optimistic, to a point he discharged me. Sadly I have suffered a recent relapse. I have severe weakness in my right leg, have a burning, raging pain in my right side. I have been dragging my leg and am suffering severe dizziness. I had an accident, due to this, so now I am on crutches as I have torn my ligments and tendons in my good ankle. I try to keep smiling, sometimes it's hard as I feel that the GP's look at me and think 'yeah yeah' and get me out as soon as possible. I passed out as my legs gave way, resulting in my recent injury. I was bandaged up and sent home with crutches, but my neuro probs weren't checked. I have seen a GP as I am unable to go to work as I work with children. He signed me off and increased my tablets. I want to work, I want to be 'me' again. Reading all your stories have given me self belief. I have written to my GP as I feel that this condition needs to be acknowledged.Thanks everyone and take care
Gayle 10th January 2011
This may not be everybody's cup of tea but there is a forum for people diagnosed with 'Conversion Disorder'/ Functional Neurological Symptoms. It is a chance to chat with other people in the same boat. We are also looking into starting some sort of Awareness Campaign for NHS staff. The address is http://www.mentalhealthforum.net/forum/forumdisplay.php?80-Conversion-Disorder-Forum Although it is basically a mental health website, the other people on the forum do undertsand the complexity and different nature of what we have compared to other mental illnesses.
Nadine 8th January 2011
Hi, my name is Nadine. I have recently been told i am suffering with dissociative attacks /blackouts. i was given this website address by my neurologist and its good to see that i am not alone. even though i have been told it is not all in my mind i still feel like no one beleives what i am going through. i have been having the blackouts for about two years now, and nothing i do has lassened the effect or frequency of them. I have had numorous people telling me that i am makeing them up, but they are very real. i am a mother of three young children and hate that this happens in front of them and hate what i am putting my family through. after reading your stories at least i know that im not going mad. thank you
Click on the drop down pages on "Feedback" for more feedback