Kathryn 28th March 2011
This site has been incredibly helpful. I started having black-outs, weakness & confusion a couple of years ago. I went to Mayo in Jax last fall. They were unable to diagnose anything, just eliminated some serious diseases. Your site perfectly explained my symptoms and gave me an idea of how best to live with this and/or get help.Bless you! Bless you! Bless you!
Gail 14th March 2011
hi i was diagnosed with conversion disorder in 09. I had left sided weakness dizzy spells and spent lot of time sleeping. I went to a psychiatrist and was told nothing wrong with me all in my mind, got sacked from work cos i got my licence revoked, psychiatrist thought this would make me better. Put lot of pressure stress on my partner he walked out that put load more stress on to me. Symptoms changed excruciating headaches felt so physically ill couldnt walk 3 weeks. Got over that went on holiday to turkey may 10 had great time only lost my leg once just woke up in the morning night time. I still couldnt walk properly my left eye was like a sharp pain behind it something pulling didnt lose my vision just hurts and some days it still does. i wear glasses i got 1 short an 1 long sighted ive put it down to eye strain. i have pain in my hips right knee and ankle which ive put down to old age. im 47 yrs old my left wrist hurts most days gets worse when im tired. I was told it was because i drove a car. by a behavioural therapist who deals in eating disorders. My 1st gp thought it was amusing and didnt believe me he even laughed at me. ive moved on with my life i got new job working with severe learning difficulties ive been getting loads pain but just get on with it. my way dealing with it is to ignore it. mind over matter - it dont work really. but just have to learn to live with it. pretty good these therapists and psychiatrist replace one set stress and dump a heap more nice, i thought i was going mad . therapist told me i had a serious psychiatric condition when asked to explain she told me that im normal dont need any medication and im neurotic and hysterical, well i can only be one or the other and i wasnt before any of this started but ended up like that. i dont tell anybody how i feel now dont complain or go gp im not believed so not worth telling.
Gaynor 7th March 2011
I have just been diagnosed with functional neurological disorder (after a previous diagnosis of CFS and Fybromyalgia ) getting gradually worse and worse with no break in between, the neurologist said I may have it for life, or one day I may wake up and be totally normal, I was referred after a weekend when I couldn't walk at all, I have been on anti depressants for about 20 years, now on citalopram 40mg and cocodamol in differing strengths depending on my pain, tramadol, and diazapam, which gave me the first real pain relief I have had for years. It took me two weeks to walk again. I asked if it was likely to happen again, and he couldnt answer, he told me it wasn't in my mind, and referred me to this website for further reading. I have had the physio for CFS which made no difference, i.e. stopping before I get tired, dont go mad and do everything on a day when I feel well, (which I havent had for 8 years). I havent worked, since 2002 as I can fall asleep at any point, I cant walk up stairs, have no memory for tasks, and need a lot of reminding of what I am doing and when I am doing it,. I do feel at times that I am going mad. If this is the back end of hyperprolactinaemia, then I wouldnt wish it on anyone. So far I am just getting worse with more numbness and weakness in my legs, I spasm at night and need help to move, I hurt from head to to, and I am really fed up, although I wouldnt say this is depression, having had it. I dont want to hide myself away, but I wont go anywhere on my own as my legs could give out at any point. Sorry about that, I just feel so frustrated that there still isnt a real name for what is wrong with me, just that I do have neurological problems, but ones where no damage is being caused. Strange that I dont fully recover after each bad bout, I would love to walk properly again, one day to wear heels, to raise my arms above my head without them dying. And now the visual problems have started all over again!
Mo 1st March 2011
I was diagnoised with functional neurological disorder in Jan 1011 after 2 years of symptoms. What i find hard is how to explain to people what i have without them thinking its a pyscological problem!! Im learning to cope and adapt to my life which i take a day at a time, so for people around me to understand would help me
James 20th February 2011
wow a great site, i was taken to hospital with a stroke syntems weakness speech problems etc.. but no scan for five days so they said they can not be sure. its taken over my life from three years ago now i cant cut hair. fell downstairs alot memory problems under pressure stutter speech etc.. so again back for more scans any advice for me thanks james
Joanne 15th February 2011
I was diagnosed with somatisation disorder and migraine on Friday 4th February. The last 18 months have been so difficult, with doctors telling me that as women get older we have to learn to live with pain. and A&E doctors saying im wasting their time and theres nothing wrong with you!! Im 38, i have a full time job although havent been to work since last November, mainly due to the disorder which has progressed into chronic pain throughout my body and my legs becoming paraylsed. causing a callapse,this happeneds,most of the time with very little warning, the warning signs i do get include lower back pain, pain in my legs and burning sensations,abdominal pain,feeling dizzy, confusion and a loss of memory meaning not being able to put the correct words together to complete a sentence. I remain fully concious throughout but my eyes become very glazed and i begin to stare, this lasting a few mins. I have to lie down or sit down and my legs become very heavy making walking impossible.This has happened on many occassions including at work. I have had many tests, many blood tests for rare conditions,mri scans, ct scans,eeg,abdominal scans, xrays for chest and bowel..the list goes on..and they have all come back normal. It does tend to affect the left side of my body although it has happened both sides. I collapsed many times on the ward while in hospital and luckily for me the specialists and nurses were very sympathetic and helpful. I am now waiting for an appointment to come through the post to see a psychologist. It has caused a lot of stress and upset to myself and my family especially my children. I am trying very hard to think posative and thank you for sites like this which i am finding very helpful xx
Amanda 6th February 2011
I was diagnosed on friday with somatisation disorder and migraine variant...and a few other things i also have chronic fibromyalgia as well ..its been so hard the past 18 months. I'm almost 40 i was working a full time mum then i started having blackouts for no reason.. no warnings.. i'd be out for a long time. One happened at work and left me with an almighty headache after and blurred vision..ive had mri scans and every kind of test possible seen upteen consultants for finally someone to tell me im not losing my mind on friday and that all the sypmtoms im having are here on this site...chronic pain,bowel incontinence (ibs) and other .memory loss lack of concentration ,mobility is almost none, tremors are horrendous ,headaches almost every day and can last days crying all the time, lack of sleep or getting up at ridiculous times and not being able to go back to sleep...getting my words backwords when talking to people...tingling sensations in both my hands and numbness. it only affects my whole right side of the body im so embarressed when the tremors start cause there so violent and make my head shake to. my 10 yr old daughter has had to take on the role of carer as im not able to do most things with my body and i want it back desperately....friday was the first time i felt hope..
Ian 4th February 2011
Thanks for providing this resource! As a NHS Physiotherapist trained to look at the body more like a machine the symptoms described make little sense but are extremely common (particularly in complex or ongoing pain problems). Have you heard of Sandra Blakeslee's book The Body has a mind of its own? The site , www.thebodyhasamindofitsown.com describes the science,and the book is readable too. I hope more Drs and therapists take an interest in understanding these problems as they are extremely common! Perhaps the dualistic divide in medicine will be a litte less of a gulf with more understanding?
Brian 4th February 2011
Hi all. I have finally been diagnosed with FDNS. I worked for the cable company and had to go on disability cause I was more a danger to myself then anything. What started me to finally see a doctor bout it was I was on a pole trying to work and my left hand/arm started to lock and curl up. At first I thought it was carparl tunnel so my GP sent me to a hand orthodonist but when he had me do some tests he found it wasnt carpral. He sent me to a Neurologist who actually listened to me and is helping me understand this. I am going for my EEG next week, already had nerve test done which showed unusal twitching and a MRI which was normal. I recently had to move back home since I am still on work disability. I have trouble cooking for myself cause my right side has started shaking and tremors also. I also have migraines/blackouts. The tunnel vision and my stutter which i had as a kid gets worse when I try to talk to long. What took so long on seeing the doctor, well I turned 40 last year and just thought it was part of growing old. Here we might have found a start for when mine started happening. I got injured in basic when I joined the army. Got whiplash real bad for 2 weeks and instead of recylcing me they decided to have me play catch up. I was fine till I got to my duty station in germany. Thats when I had my first seizure. The medics wanted to take me in but my sergeant wouldnt let them. He told them I was just faking it.I still get the seizures but not as bad maybe once a year. The migraine/blackouts I get more. So for years I just never thought anything on the seizures and thought they either just my being out of shape cause it was like hyperventaliateing.The tremors started about 10 yrs ago but I thought it was just carpral tunnel and just worked with it. As the years started going it got worse and worse till flash forward where I almost fell off that pole.I was placed on epitol for a few months but that didnt help, now I am taking celaxa but just started that. I had a major black out where I collapsed on the floor about a month ago. Which prompted my neuro to start doing some other tests and directed me to this sight along with seeing a pyschchiatrist. But where I had back surgery and fell twice on the ice and lost all feeling in my legs. I have to use a cane to help walk, especially really far. So my neuro agreed with me to apply for perm disability cause of that but keep up with my check ups so we can find a diagnose and get it to where its controllable if possible.
Kay 31st January 2011
I am an OT and have recently received a referral for someone diagnosed with this condition. I wanted to say how useful your website is. So very clear and answers the patient's questions in way that is very easy to understand. I have saved it as a favourite. Thank you.
Click on the drop down pages on "Feedback" for more feedback
Terry 1st June 2011
DID (Dissociative Identity Disorder) with similar history of ataxia and myriad of neruological, primarily oculomotor changes-all much better; I am in health care field. I am aware of the prevalence inside high schoolers with "pseudo seizures" and no follow-up thus they loose out from school and feel they are wierd. I would like to help this become more believable inside health and nursing so folks can get on with lives. As myself and the young adults I 've known years and years before real diagnosis is given of dissociative disorder. It is a paradigm shift that needs to occur.
Shirley 29th May 2011
Hi, your site is great. I have been diagnosed with right-sided functional weakness. After trying to go back to work about 6 times in the last 2 years ; i have had to give it up. Since august 09 i have had loss of use of arm, leg on right side. My eye feels like it is (fluttering)?on and off. Some days i don't remember anything, can't concentrate, and get that feeling where you feel your watching things from a distance. I banged my head in december and that made things worse. I get times when i see wavy black lines before my eyes, twice bright stars. I did think i was going crazy a few times. thank you for helping me realise that this will pass, i just have to take things at a slower pace. i try to keep going and do things but somedays i have to get more help than what i would like(i have been used to coping with things all by myself.) I still need help to cope with things but hopefully i can get the help to better understang whats going on and also to help my family cope as i was the one that usually kept things running smoothly.
Kerry-Anne 25th May 2011
hello, my name is kerry-ann. i am 26 years old. i was diagnosed with functional weakness on 6th december 2010. i was having a hard time with other medical issues and this is what myself and the neurology dr thinks might have triggered the functional weakness. i have had a lot of operations, such as laproscopy, laparotomy, tonsils removed, bowel perferation and two c -sections. the last bit of my medical history was possibly having a hystorectomy, but due to my bowel perferation while having a c-section with my second child i have to avoid any kind of surgery. unless urgently required. so hearing i might need a hystorectomy at 26 was very hard to deal with. what we believe has happened is that it was just to much for my body/brain to deal with. and as my neurologist explained it, its like a software problem on a computer. so all my hope was put into positive thinking to try and regain my old life back. i think i should explain what happened at the beginning. it was 6/12/2010 the morning after my youngest turned 2. i woke up and my left eye had drooped and was very swollen, my left corner of my mouth was slightly drooped also,i thought i had maybe taking a reaction to something, so i phoned my GP and was asked to come in imediatly. the doctor i saw thought it was bells paulsy. so she gave me steriods and said to call if things got worse. but within 45 minutes of getting home and taking the steriods my mouth drooped more and my left arm started tingling then going numb. again i phoned the GP and was asked to come back in. this time i was sent across to the hospital for tests.luckily my husband was with me. i still didn't worry too much yet.although the thought of a stroke was crossing my husbands mind.anyway i was tested for a stroke and other things but all came back clear. only my symptoms were getting worse. my leg started dragging and i was having trouble swallowing fluids.the nurse came in and done a swallow test which i failed. it was decided i was to stay in hospital and see a neurologist. which i did. he asked for some more tests to be done including a lumber puncture. which to my luck was clear.but by this time i could not move my left arm or leg or open my eye. he done a few more eye tests and a hoovers test. which helped him conclude to the diagnosis. functional weakness.he said that i should improve with some help. and i did start to improve after a few days and help with physio.i was glad, my positive thinking helped me fight. but it wasn't long before i was back in hospital. i had relapsed again. i had to start with physio all over. and once again things looked good, so good that my neurologist was happy not to see me again.great news so we thought. i was still having a bad day here and there and getting tired very easy. then things got bad, i caught a bad cold and i started having twitches, my head would start twitching to the left it was like a trapped nerve was caught in my shoulder. it was very sore. these started coming more frequent and on one occasion i was back in hospital. i couldnt get it to stop.i seem to be catching every little bug, i try to stay away from people i know is not feeling well.it is now 6 months since my diagnosis, but instead of getting better, i now seem to relapse more often. i am still keeping my positive thinking and praying it goes away, but right now as i write this i am in my bed not able to move my left leg or arm and my face has drooped and so has my mouth, my speach is also effected today. my speech has always been off since i got this on 6th dec. but every now and again i get it bad where people find it hard to understand me. i am waiting to see a psychologist, to help me understand and try new techniques. i hope things start to improve soon. im unable to work at the moment because i get forgetful but also can not walk.i have social work helping me get things to help me improve. i am always thinking it might just go away.i hope my story might be of help.