Functional and Dissociative Neurological Symptoms : a patient's guide

Hemi

More Feedback - Page 9

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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/

 

Belinda 13th January 2012

Thankyou for your website, the first real information out there that helps and makes me feel like less of a freak. I'm beyond the end of my tether after about four year of speech/stuttering/mute difficulties, hand issues where my hands do a painful 'claw thing', full body convulsions where i close up like a flower, dizzy spells, lots of falls, movement issues with weak legs/dragging feet/usless legs to the point of now having to drag myself around with totally unresponsive legs at times and using crutches for any moving now. I worked hard to go through university to become a teacher and planned a life of supporting my family only to become a burden on my loved ones with no real worth . Now my husband (happily I might add, he and my girls are great too) supports us all financially. As well as physically and doing most of the home chores, where as before we shared all chores etc equally. My girls help me alot where i see my place as to help them. I have felt so usless and alone and have become so sick of being passed along the medical roundabout to once again be treated as if im making it up. Thank goodness for the rare few who try to help like the two counsellors I have had Lisa and Angela, as well as a hypnotherapist Carol. I have a question please. When diagnosed i was told, and the only information I found ,said Conversion Disorder was short term, so I have felt like a failure when my symptoms have not only stayed but grown worse. Has anyone recovered. Most things I have read seem to be people accepting their conditions and living with it. Im starting to think I should do the same but dont want to give up on being normal again either. Do people recover? Has anyone out there recovered?

Editor: People certainly do recover from these illnesses. It is hard work and not everyone can recover. Its important not to feel guilty if it proves too difficult. Read the stories section for examples of people whose symptoms have improved. I personally find that when people get better they often dont want to think about it or write their story for the website - please let me know if you want to post your story on the 'Stories' section

Vicky 12th January 2012
Hello there. After going through a very lonely journey of a diagnosis of Functional Neurological disorder, i often look at your page for updates and infomation. I have had the unfortunate experience of ignorant consultants and they seem very unknowlegeable of this disorder. I have a few questions which i cannot get answers from any other resources so i really hope you can help. what is the diagnostic criteria for functional neurological disorder? Why does the medical profession know very little about it? Is this a genuine disorder or an umbrella term? And most importantly, is this a mental health illness or a neurologicl disorder? i think this website is good but does contra-indicate itself with the last question i have just asked. I do not have seizures, my symptoms have been consistent since i had influenza and my spine has a large thoratic curve due to muscle spasms. I have large masses on the back of my neck which has baffled my neurologist as nothing showed up on the MRIs. It has baffled him so much, he took the scans to a confrence for other neurologists to look at where no explanation was found. I am confident i do not have a disease such as multiple sclerosis or anything like that, but i really need answers for my above questions as it is impossible to get them from any resources, believe me, ive tried. If i cannot get answers here, i would appreciate it if you got back to me with somewhere i could please get some straight answers to my above questions. Thank you for your time
Editor: I have tried to answer these questions on the page 'In the mind?'. .

Emma 12th January 2012
I was involved in a car crash nearly four years ago. Since then I have been suffering from spasms. These spasms can last anything from a minute to half an hour. They sometimes just start for no reason. I can be lying in bed reading, watching television or washing dishes and I will just go into spasm. I wake my husband up during the night having a spasm sometimes without me even being aware. They mainly come on when I am touched on my neck or back - hence the reason why I was unable to have physiotherapy and had to stop having acupuncture. My husband has to be careful when he gives me a hug and even when I am lying in bed and he kisses me on the head or cheek a spasm can be triggered. I am unable to sit for any length of time because I start having pain and buring sensation and pins and needles in my left arm then restricted movement. If I continue sitting I get a funny sensation up my thoracic area and a spasm comes on. I am able to drive short distances because I have had the spasms so long now that my body knows when one is about to start. At the beginning I did not know and would have no warning so had to hand my driving licence back to the DVLA. I have had nearly every test under the sun but they all come back as negative. I have seen 5 different consultants at different hospitals both on the NHS and privately. I have been treated by consultants like I am something on the bottom of their shoe and have not been given the time of day. I am at a loss as to where to go from here. No one can help me. However it does help to look through this website and realise that I am not making it up and there is something wrong. I was initally off work for nine months and this time round have been off work three months. My spmtoms are not improving and I have been put on so much medication that its a wonder I do not rattle !! Ive been on Diazepam, Nortriptyline, Amytriptilyne, Tizanidine (which may be of some help), Tramadol, Pregablin, Diclofenac - and these are the ones I am able to recall straight away. Like other people I have been told it is down to anxiety but I know that this is not the case. My father died in 1999 in a car crash and I even had one consultant who said that the reasons I was getting the symptoms is because my dad died in a car crash !! I didnt dare tell him my parents were divorced incase he said it was because of this or that my rabbit died when I was 10 incase he said it was related to that. He obviously could not be bothered and came up with the first thing he thought of. I am currently trying to arrange a private consultation with a Neuro-Psychologist at the Spires Hospital in Birmingham who has been recommended and specialises in working with people who have been in RTA. I really hope that he can offer some assistance because I do not know how much longer my employers will allow me to keep my job with all my absences from work. Fingers crossed that this bloke in Birmingham can assist as I am seriously running low on options. If anyone has any recommendations or advice please respond or even if anyone knows of any support groups where other people with similar issues can talk to each other. If there isnt one could we try setting one up ourselves ?? Good luck to you all and I really hope that you get the support you require. Just reading this website makes me realise I am not the only person in the world experiencing these symptoms (Like some of the Drs I have seen try to make me believe) which does help.

Editor: There is now a facebook group you can join at
http://www.facebook.com/groups/322848047124/10150468944737125/?notif_t=group_activity
I am not part of this group but I hope its helpful

Lee 8th January 2012
i have been suffering these types of episodes for nearly 8 months now. My GP has been treating them with propanolol which i think is at the neurologist request @my local hospital as he thought the episodes were 'triggered' by anxiety. All other tests such as an MRI were normal so there is no sign of epilepsy. On reading the information provided on your website i think alot if not most of it co-incides with my experiences. Although i noticed there is no mention of 'tiggers' or the fact anxiety having an impact. i was wondering if this may be a factor or if i may have been wrongly digagnosed as the medication does show signs of improvement. Also i would like to know if there is anything else i could be doing to prevent the episodes as at one point the were very regular and had a huge impact on both my working and social life. thankyou for your time. kind regards

Editor: Anxiety is often very important in dissociative (non-epileptic) attacks. Some people notice a clear relationship between feeling anxious and having attacks. More commonly people do NOT notice such a clear relationship but do find that they are generally anxious between attacks, particularly about when the next attack is going to be and the consequences of the attack. Some people with dissociative (non-epileptic) attacks do not feel anxious at all at any time. I hope the pages on treatment of attacks (1 and 2) are of some help.

Shirley 4th January 2012
When my neurologist finally gave my illness a name I felt like kissing him! After multiple scans including a dat scan, mri scans and a cat scan all of which came back negative I began to think other people must be thinking I was making my multiple range of symptoms up. I knew I wasn't making it up. I am almost unable to walk due to a dragging leg and pain, trembling problems, not to mention dizziness and concentration and memory problems too. I really thought the neurologist had got it very wrong and I had some awful progressive disease. After reading this website I now know it can be reverseable so I am going to do whatever the doctors suggest might help. As I have been unable to work for nearly 2 years now I now feel more positive than I have for a long time. Thank you for taking the time to create this amazing website