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Hemi

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