Functional Neurological Disorder (FND) : a patient's guide
including Functional/Dissociative (non-epileptic) Seizures, Functional Movement Disorder and other functional symptoms
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Kerry-Ann 15th October 2011
My story is below. i have set up a blog about functional weakness. its really about how i am dealing with it from day to day and to try give others a little helping hand too. i have found your site amazing! my blog is myfunctionalweakness.wordpress.com
Kerry-Ann 28th September 2011
Hi i posted a comment a few months ago, i have functional weakness. i have spasms where my head twitches to the left, when they get violent my left arm and leg also twitch. i have started seeing a physio therapist. i have got a bit worse since i wrote last. i cant walk far and need the use of a wheelchair if i go out, i get very tired easily. it is very frustrating because i want to do the things i was able to do before, but my left side wont do as its told. i am still as positive as before and pray it will go away completely, but its been 10 months now and its not getting much better so my aim now is to try and control it. this being my point in sending another feed back.
i have found a way of stopping my spasms when they come on. i cant stop them coming on, but i have found a way to stop them. when i have a spasm my left eye is closed and i cant open it, so with my right hand i open my eyelid and focus on something around me. which within a few minutes the spasm has stopped. i have tried this 3 times now when having a spasm, and it has worked everytime. its all down to distraction i think. i have a lot to learn about controlling this, but it does start to show that it can be done. i have the view that i might not be able to move my left side and at times i look like im having a stroke, but i have the power to learn and control this and not let it take over my life. if you put your brain to work slightly different to the way it used to work, im sure in time functional weakness can be controlled. i still see a neurologist. im due to see him in january unless things get worse. i do think however im so positive about it because of my support team i have around me. i get asked from time to time how i can be so positive, that they couldn't be like me, but if you are down and let it take over where will that lead you~? plus i do say that im sure there are people out there worse than me, im still alive and have fight in me to win this war that my body is fighting.so if anyone out there thinks its not going to get any better, i just want to say it will, and if you keep positive and ask for the help you need,not just sit there without asking for help it can get easier. i have a traffic light system where green is im ok, amber im getting tired and red im bad
Lois 22nd September 2011
I am 57. 26 years ago I gave birth to my youngest. Immediately after, my left leg didn't "work". I couldn't run. It was stiff. I started stumbling, falling, it was weak in the heat and rigid in the cold. I had MRI's on my brain, I had electrical senory testing done. All were normal. The Drs did notice there was a weakness in my left leg. I went to a different neurologist, she diagnosed me with famil semi paresis (sp?) and put me on baclofen. I didn't stay on it very long. I also had physical therapy. I was under alot of stress, dealing with an alcoholic in my life and all the "dysfunction" that goes with it. It's awful to say, but after he died, my leg seemed to work better. It seems when I'm doing well mentally and happy with myself, i can walk. However, 7 years ago I met a man, left my job and house and moved to another state. Low and behold, my stress has been back and my leg is getting worse. It's getting embarassing how I walk. At times, I can't bend my knee...i fell and broke my foot and leg in the past 3 years. I have fallen and stumbled many more times, fortunately nothing broke. When I saw this article on Functional Weakness, I felt it was what I have. When i have to walk in front of people, when I am having a difficult time emotionally, i literally look ridiculous! I'm really tired of this...I have to think how to walk when I am walking....I'm afriad to try to walk normal, because I think I will stumble for sure. HELP! P.S. I also have sever resless leg syndrome in the same leg and I take Mirapex for it, which a possible side effect is difficulty walking and rigidity! However, I can't go without it!
Joy 15th September 2011
I do not believe in this condtion at all . If someone is experiencing pain and fatique along with sensory symtoms i feel this diagnoses useless and less than helpful for people who are generally suffering . There are many illnesses that can not be diagnosed easily such as lyme , lupus, and ms most people will have a genuine illness and will be suffering due to lack of care from doctors .
Note from Website Author; I'm sorry that Joy doesnt think that people with functional symptoms have a genuine illness. The information and many experiences on this website makes it clear that they do.
Nicola 28th August 2011
my husband has been ill for 14yrs and now been told he is having dissociative seizures.... he doesnt jerk and sometimes we get a warning... he slurrs his speech, gets angry, falls and can be unconcious for up to 17 hours.. neurologist tried trazadone and now on mirtazapine but these are making him worse. we have had to get a wheelchair for him as if we are out i cannot lift him.. our neurologist is awful and not helpful, and says he has to live with it
Susan 28th August 2011
Thank you to all who have shared their story. On a lovely May day I was driving home and my life changed. Crashing pain in my chest sent me to the doctor thinking I was having a heart attack. Two days later I could not walk, or talk and and the tremors started. As a long-term migraine sufferer the doctors thought it was a migraine headache. This was followed by a year of doctors and therapists. One neurologist telling me that I had fucntional movement disorder was permanently disabled and to apply for social security disability with no other explanation. Thankfully I found another doctor who explained FMD to me and recommended this website. It has been two years now and I have lost my job and am no longer able to drive. I walk with a cane, but there are days where a wheelchair looks to be too close as an option. It is wonderful to know that I am not alone in this world with FMD. Thank again to all who have submitted their stories.
Neil 5th August 2011
There is so much I could write on how this disorder has affected me, both physically and mentally. Frustration, confusion, pain and fear, anybody viewing this site as a patient will be intimate with these. But all I want to write is Thank you.
Claire 4th August 2011
Thankyou for your all your comments they have really given me an insight into my (our condition). 6 weeks ago i awoke 1 morning with a tremendous headache ( i felt like i had been hit round the back of my head with a baseball bat) i ran to the loo and was violentely sick i looked in the mirror and the whole right side of my face had dropped and my right eye was so puffy i was unable to open it and my left ear was bleeding. I went straight down to accident and emergency where they wanted to preform a lumbar puncture ( i said no like an idiot and discharged myself and went home to bed headache getting gradually worse) i woke up the next morning unable to move my right side and was terrified it was so frightning i decided to go back into hospital. I plucked up the courage to have a lumbar puncture and it was not as bad as i thought and it came back fine apart from very high pressure on my brain (35) so they decided to do 2 CT and an MRI after all the test results coming back fine and after just over a week in hospital i was discharged with the diagnoses migrane with aura which really really angered me and my family.
My dad fought really hard to get me an appointment with a neurologist which i had 2 weeks ago and she diagnosed me with functunial weekness. I thought i was being fobbed off and they thought i was lying but the neurologist gave me the link to this page and i am delighted that i am not on my own going through this and that most of all ITS NOT ALL IN MY HEAD!!!!!!!!! before coming like this i was a happy healthy (ish) eightneen year old and now im depressed constantly tired very imobilised and im just getting worse! i have mental spells where i dont know who i am where i am and apparently my voice changes into that of a small child. My good leg is now going and my good arm dropping everything i pick up i think i still have not come to terms with this illness and that gradually i am deteriorating i just hope that i will be able to cope because i am determined to get there with the love and support of my friends and family. I have an amazing family and a great network of friends i have another MRI for the end of this month and a follow up appointment at the start of next month. I hope my story helps someone out there how lots of other peoples stories have helped me.happy health to you all. Claire
Karen 31st July 2011
THANK YOU JUST DOESNT SEEM ENOUGH BUT I WANT TO SAY IT ANYWAY. I have had every single simptom listed on your site at some point, usually most of them at the same time. They have been diagnosed singularly and in groups as being caused by or the cause of different things but after 3 years i finally have a correct diagnosis. I am no longer able to work or drive as multi tasking brings things on big time but I am not in my wheelchair as much these days (touch wood). They have decided one of the main factors to set everything off is stress (go figure) so this was my families wake-up call and everyone takes things easier now. Things routinely get slightly better then worse again but there is light at the end of the tunnel thanks to you. I have no memory of the first 18 months of this problem except through a fog but I am no longer worried that I will forget my family and just dissapear.Once again thank you.
Sophie 22nd July 2011
Hi,Thanks for your very understandable website. I'm sick for 6 years now. After a long period or going to hospitals, I was told I had a Conversion Disorder. A couple of weeks ago an other neurologist called it a functional neurological movement disorder. My symptoms are fatigue, pain, spasms, ect. I have a blog now, maybe it can be at use. Sophiebrain.wordpress.com. I'm from the Netherlands, but the blog is in English.Thank you.Sophie
Irene 13th July 2011
An excellent website. I was diagnosed 2 years' ago with CFS/ME. This followed a RTA. I have suffered functional weakness which includes walking difficulties, balance issues, nausea and visual disturbance. It is good to know that I am not alone and there is light at the end of the tunnel. I have had help from ME therapists and physiotherapists and am waiting for an appointment with a psychotherapist. After reading your very helpful website, I will certainly try to walk without thinking. That will be a start. Thank you for your help.
Deborah 10th July 2011
I am so grateful fo this information, as I was starting to think I was permanently feeling crazy. I recently had an extraordinary personal tragedy and it wasn't till 3 years later my symptoms occurred,when you think you are on the home stretch of the grief and trauma cycle,along comes a curve ball. However these symptoms led me to find another major medical problem which has been resolved and I continue to have amazing successes each and everyday.
Sophie 7th July 2011
I have had Functional Motor Disorder and Chronic Fatigue Syndrome for the past 18 months undiagnosed. I have just been diagnosed and my neurologist gave me this web address. I feel like a weight has been lifted and can see light at the end of the tunnel! I know it's going to be a slow process but that doesn't matter to me now. What a wonderful website. I know longer feel alone.
Aaron 30th June 2011
Just over a month ago after leaving a clients house, being a carer, my right leg started to feel funny. I thought nothing of it then when I looked down I noticed it was pointing outwards and I was starting to drag it. I thought I must have hit it and gave myself a dead leg but it lasted the entire trip home which was 45 min walking. It started to go numb with a tingling sensation.
When I got home my wife asked what I had done to it. I said nothing “just walking”, I then rang my friend who is a physio and got him to take a look at it and he said to go down to A&E. When I was seen by a doctor he said I had sprained it and it would be alright within 24-48 hours. I thought ‘that’s good news’ but 2 days later and it was still the same.
So I went back had more tests done, had a high temp and blood pressure but again all they could say was 24-48 hours and will be back to normal. So I gave them the benefit of the doubt, waited 5 more days and it was still the same.
So off I went back to A&E not taking “24-48 hours” as an answer. I had an x-ray of leg and hip and a referral for an MRI. A couple of days later I was not feeling well at all being sick with a high temp, hot and cold chills and diarrhoea. I then started to get pins and needles in my right arm as well as my leg so my friend called an ambulance.
I was taken into hospital which was a good thing as soon after my oxygen levels went down to 60. Then I woke up blind and paralysed for an hour. The doctor was putting a needle in my wrist to see if I could feel anything and I couldn’t so I was rushed for a CT scan which came back normal. I was admitted for a night and then the next day I was told I was going to have a lumbar puncture. Then I was sent home at half eight in the evening saying I was not allowed to be left on my own anymore. When I got home I had a phone call saying I needed to come in the next day for more blood tests as they had found a bacteria in my blood. The next day did some more blood tests. I was told I would get a headache after the lumbar puncture. The lumbar puncture was normal normal but the headache only came on when I was sitting up or standing up. Lying down seemed to stop it.
The next day was a Friday. I was ok all morning though still had this headache which was not really a headache more of a inconvenience as I had to lay down all the time. But I needed to go to the bank. I started to feel worse and the light was really affecting my eyes. Shortly after coming home I thought I would lie down and the next thing I realised the ambulance crew were asking me to open my eyes and I could not open them all the way. They checked my over and found a rash on my back which did not disappear after putting a glass on it. They rushed me into hospital but it became quite apparent it was not meningitis. More blood tests were done and other tests I was admitted again at about half 4 in the afternoon.
When the doctor came in the evening he said under no circumstances was I to go home until they fully knew what was wrong with me. They also said that they were gonna also give me an MRI and to see the neuro the next day. The next day I had paralysis again. This time I could not open my eyes or speak. I don’t know how but I managed to call the doctor as he was walking by and explained to him it had happened again so they tested me and still no movement. They did say it would come back but this time it lasted much longer than the other ones which ranged between 20min and a hour but I did get full movement back. The neuro came to me and said i had functional neurological syndrome and gave me a website that had information on about it but he would not tell me any which is great work from him – not. Shortly after that the occupational therapist came and looked at how I walked and climbed stairs so she gave me a stick and a bath board to use in the shower. I was then told I was going home then not going home then going home even though the doc from the night before said I was not allowed to go. I was discharged again in the late evening with more paralysis over the next 2 weeks which lead us to the 29th april 2011.
I have had more episodes of paralysis with the MRI being normal. My leg is also still the same and feels as if its getting weaker though I am doing exercises for it. I still have not been referred to a consultant or a physio of as yet and I am back where I started with no news of what’s wrong.