Lorna 20th March 2012
What a wonderful web site, Thankyou for so clearly putting this , explaining it in terms that correlate so well with my experiences with pain patients, and the article in Practical Neurology is brilliant!. ( neurology texts have not really helped me here in the past) I will be sending patients to your site
Donna 16th March 2012
My name is Donna. I was diagnosed in 2011 as having 'T,I,As' this all started about 2 weeks after my 33 birthday, i was admitted to hospital as an impatient 4 times, during one of these stays i sufferd 2 'seizures' both of which i remember nothing about.. i was diagnosed with a form of epilepsy and previous Tia's were disregarded, i was treated with a drug called Keppra, after the first episode of Tia i developed a heaviness in my right hand side, after a few weeks this got better, from personal experiences i knew that symptoms of Tias usually disappeared within 24 hours. i treated this as a 1 off and returned to work. shortly after it happened again, this is when i had the seizures and the heavy dragging sensation lasted longer. each time this happened my balance/movement/concentration amongst other things got worse. later on after yet another episode and a visit to the hospital i was relieved to find out that i had not had any epileptic attacks. i was relieved to know this as i relied on driving for my proffesion(community care assistant). much as i didnt want to be having 'mini strokes' that was a better output for me with regards to driving. I was taken of the Kepra and within the week i started to have pain in both legs as well as the heaviness on my right hand side. i took pain killers for this. After 4 weeks of the last episode i was able to drive this came as a relief to me as i have 2 young children and a partner and am the only one at home that drives, but it all depended on how my legs were on that particular day. to cut a long story short my legs seem to get a little better for a week to 10 days and then flare up worse than previously, on occasions the pain travels up tp my cheek and around my eye and i sometimes find my arm just hanging there. it has been tough on us all, my family have been very supportive and i have found out who my 'friends' are. other than the moods and the intense tiredness the amount of tablets that i was taking the 'accidents' amongst other things the worse thing was the consultants telling me that it was psychosamatic. i felt so selfish my 14 year old son had pushed me in a wheelchair my partner has had to help me with personal things and they have all witnessed me falling on numerous occasions. i was so releived to have the support of my own gp and he was the one who informed me about this web page. i have not felt this positive for a long long time and hopefully i can get back to the good old me and stop worrying my massive support system i should be looking after my parents and children not the other way around xxx
Tina 1st February 2012
Hello everyone, I would like to give an update to my story. My daughter was diagnosed with conversion disorder in 2010, she was 12 then and her symptoms were so frequent she had to be homeschooled. She would have involuntary body movements, non epileptic seizures, and days when she couldn't walk. Now she is 14 and has been back at school for a year now. Her symptoms are so much better now. She does still have some episodes, but when she has them she gets over them quickly. We continue pschiatric therapy and hopefully one day she will be symptom free. She does live a pretty normal lifestyle and I hope this story will give someone else out there hope that symptoms can get better.
Emma 30th January 2012
I wrote on here a while ago and wanted to offer an update to help others with these symptoms. I went on this website then joined the facebook page - as mentioned below- on 12th Jan when there were 30 members. It is now the 30th Jan and there are now 62 members. Slowly but surely more people are becoming aware of this web page and of the facebook page that was created by two people who shared their views on this web page (Kez and Vic). Since I was added to the facebook page which is basically like an online support group I have felt much better in myself mentally. I no longer feel alone and it helps that others are going through the same feelings, thoughts and experiences that I am. If I am particularly down I can vent and rant on the facebook page and there is normally at least one person on line all the time. Recently a few people have been admitted to hospital and when they or the relatives/carers have mentioned this other members on the page have posted get well wishes and offered support. I myself have not been admitted to hospital recently but I am sure that if I was one of those who had I would feel special and grateful just knowing that these other people on the site are supporting me. If you havent joined yet I recommened just at least looking at it and I really hope that you find it as helpful as we do.
DD 30th January 2012
Hi everyone, like everybody else i have found the site very informative. Just wanted to check if anyone is similar to me. I was daignosed 14 months ago with conversion/ neads after three years of symtoms. I resonded well to treatment at first and was doing ok at home, just the odd bout that i was able to cope with. I now have all my symtoms back again and because i have to wait for treatment am starting to worry that i will be like this for the rest of my life. Has anyone out there recovered completely, or even to a stage where they can live a fairly normal life. My mobility was badly affected so i have real worries about the future and my ability to work and provide for my daughter. Just wanted to thank everybody for sharing their stories, its great to feel like your not the only one
Marie 26th January 2012
my stories has been on here a few times in the early days, i've been suffering for the last 3 years, i'm was diagnosis in April 09, with functional neurological disorder, my life has been devastated by this illness, my legs dont work anymore, i struggle around the house as best i can, i use a wheelchair outside, i have a support worker, 6 hours a wk, she is fab, and has changed my life around in some ways, ive had a very lonely journey with this illness, isolated, ive lost so much, my life, job, my relationship with my hubby, my gp has been very good along the way, but recently i feel he has turn on me, he keeps saying i need to take responabllty for myself, i really dont know what that means????????????? he already said he knows i am not making this up or knowly doing it to myself, he also said he feels that the social services and my family have colluded to keep me ill, i am discusted with him, why the hell would anyone, want to be like this!!!!!!!!!!!!!!! Do i change my doctor???????? my life is difficult enough, without the help of my gp, I'm sick of deffending myself, for the last 3 years, i dont know what the future wholes, i feel i cant go on anymore, i miss my old life, so much, i want to be normal, i am so lonely, there is no support, as i dont fit into a box, no emotional support, where do i go for help?
Christal 24th January 2012
Our daughter started having, what I know now to be called, NEAD, or dissociative seizures, when she was 6 years old. She would have several a day, and did off and on until she was 12, when they suddenly stopped after trying a new medicine, Carbotrol. She was on several different medications through these years that dissrupted her childhood and her schooling. After becoming a teen, she had the normal experience with alcohol, and they started again, not as often though. She does not drink alcohol anymore. She is now 21. Her last attack was three years ago, until yesterday morning. Oh, and this one was terrible! So frightening to watch your child lying there convulsing! And yes, she has always been able to tell when the seizure were 'coming on'. Sometimes she would have a minute or two notice, yesterday, was shorter than that, pretty sudden. As a child, she underwent so many different tests, scans, only to realize there wasn't anything there, with the exception of low white blood cells. The doctors assured us to go home and count our blessings that nothing was found and that she would eventually grow out of it, and that these things happened. I don't remember them given it a name. I cannot express to you enough of how this whole site has educated us on her disorder. I thank all of who has participated in any part of creating such a site. I have printed off so much, until I ran out of ink! :) So, I will be back soon! Thank you!
Editor comment:NEAD is unusual in children as young as 6 and wouldn’t usually stop with a medicine. Im glad the website has been helpful for you though
Vic 13th January 2012
Hello all. Myself and Kerry-Ann who has commented on the feedback pages have set up a facebook support group for anyone diagnosed with these disorders aswel as for support for family members, carers, etc. I hope our page can be a help to many of you. I have found talking to other people with these disorders a massive help. http://www.www.facebook.com/groups/110873699030722/