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Julia, Jan 2019
Thank you for all the information you have presented here, I have a dear friend who is awaiting diagnosis and this website has been really helpful in helping me understand and support her.
Frank, Jan 2019
My query is; given that FND is deemed a legitimate disorder, "not something imagined", yet it lays in a foggy grey area, somewhere between a Medical, and a Psychiatric disorder. Having read countless documents on the subject, since my own diagnosis, it is very clear, that the Medical professions have no idea what it really is, let alone its cause, "hardly surprising given its long and confused history", as a consequence, there is no clear consensus on a legitimate treatment plan for FND patients. You may be offered Physio, or indeed CBT as a form of treatment, "If you are lucky enough to get any such support/help", but this in reality is the equivilent of both the Medical, and Psychiatric professions fishing in the dark, in the hope that something actually works for that patient. Having been diagnosed with FND nearly 2yrs ago, I have yet to recieve anything resembling a treament plan of any descrption. Maybe other FND patients have had a more positive experience in gaining help and support through it, and perhaps with a positive outcome. Final point; does it really have to be such a lottery to get access to any such support, whilst having to negotiate your way through Medical professionals, who still hold the view, that it is somehow, all imagined?, leaving FND patients feeling that they are somewhere between, Bob Hope, and no hope.
EDITOR (Prof Jon Stone): Others do have a more positive experience including with treatment, but Im aware that many patients share your experience or dont benefit as much from treatment. We are developing an evidence base for physio and CBT treatments, based on our understanding of the mechanisms of the condition, so it isnt 'fishing in the dark' but I understand where that perception comes from. Im also aware that many health professionals continue to make patients feel as if their symptoms are "imagined". Thats why I have a page on the site called 'Not imagined'. I wish you all the best for the future.
Clair, Jan 2019
I finally had a diagnosis November 2018 after several decades of physical pain and mobility issues, the most recent relapse presenting as quarda equina, I lost mobility, complete saddle numbness, bladder retention, bowel disfunction and extreme sciatica pain in both legs, I presented myself to A&E 3 x in a week september 2018. The diagnosis has helped in that I now know what is wrong but has left me with great anxiety for my future. I have had no further help since the diagnosis and feel completely abandoned. I also suffer insommnia, dizziness, non-epileptic seizures, previous tests for diabetes, rhumetoid arthritus, epilepsy, all negative, my gp has labelled me with IBS, panic attacks, vertigo, raynauds and has never explained the 4 years of constant pain but kept telling me to go back to the physio, which I did privately at great expense over the years. I feel extremely low at the moment and feel that no one gets it or has any idea what I go through in a day.
APOLOGIES - something went wrong with my feedback form here
Flower 17th April 2016
I've only very recently been diagnosed with this and, once I got my head round it, it's made a huge difference to me. I had stopped telling my GP about symptoms in my late 20's even though they carried on (I'm now in my 60's). However I've attended hospital for separate physical problems over recent years - always thinking they were separate. Then my GP asked me extra, apparently unrelated questions when I went to see him about a long term problem with numbness in a certain area. The questions he asked me related to other problems I hadn't mentioned but did suffer from. A few days later I received a referral to the MS assessment clinic. It wasn't far off but was a worrying wait for me. The consultant was lovely, he actually looked at me as he spoke to me and asked me if I'd heard of FND which I hadn't. To cut a long story short he explained as easily as he could what was happening. He already had a brain scan from a previous hearing problem so ruled out MS. He took quite a long time to explain and examined my reflexes which don't work well on my legs - I half expected him to suddenly say 'I'm joking, stop wasting my time, there's nothing wrong with you.' It has take a couple of weeks to get used to the idea and the letter he sent to my GP with copy to me came really quickly and was very informative. I feel like I've been sort of set free - it's okay for me to be unwell and it's not my fault. Fatigue has become a big problem over the last couple of years and I didn't realise how much it was affecting me. I was retired early from work due to my voice which is also due to FND (goes into spasm when I speak, I always sound like I've got a really bad throat but it varies a lot, haven't had my own voice for about 6 years now). The good news is that it might get better. I'm picking up my prescription for pregabalin today and waiting for referral to Chronic Fatigue Clinic - I'll take anything they give me, I just want to improve. I'm still a bit wary of telling anyone because I don't want them to think it's all in my mind'. My heart dropped a bit when I noticed you talk about 'psychosomatic' symptoms. I think people usually have a different understanding of it. Thanks for taking the time to put this website together, it's made such a difference having something put together by someone who knows all about it from a medical perspective. It's been so helpful. I just wanted to interact with someone who understood.
Juliette 31st March 2016
I have just come home from neurologist, 3rd one! and she gave me this website, I have been going through some of the feedback and thought I would leave my own, my problems started in sept 2014, I was working nightshift and hadnt felt well all day, I bent down to pick something up and the whole left side of my body felt like it was tingling, next thing I knew I was waking up with people round me, I felt very disorientated,anyway ended up in hospital with a severe chest infection but nobody could explain why my face, arms and legs were numb then tingling, I got urgently referred to neurologist and he sent me for ct scan and then mri, it showed up white matter sensitivites on my brain, nearly 2 years down the line my symptoms have got steadily worse, numbness, fatigue, anemia, vit d deficiency, eptopic heartbeat( for which I have had a reveal implant inserted for), disorientated, memory problems, the list goes on,I have also just been diagnosed with an underactive thyroid which my gp seems keen to account for all my symptoms, after neurologist today told me about this site and what she thinks I have it all fits into place, the only thing i am worried about is work, I drive for a living and some days I cant even get out of bed and worried that if i get paid off will i be able to claim any benefits as is this seen as a medical condition? I am also waiting to see physchologist and hopefully this will help too, has anyone any advise for meon work situation? Sorry if Im rambling its been a long day and I am fading fast lol, thanks in advance
EDITOR: Dear Juliette, thanks for your feedback. FND is a recognised medical condition. Disability benefits in the UK (sorry I dont know the rules elsewhere) should be tested according to disability, not according to diagnosis. There is a limited amount of information on this page on the website. Family and Work.
Sue 4th March 2016
This website is really helpful, thank you. I've experienced depersonalization, visual snow and various other symptoms since early childhood. It's a long story but much of my childhood was spent within the UK care and foster system, which has led me to have a deep distrust for medical professionals. I have not received a diagnosis and have been left to deal with the problems alone. It's troubling to think that other people have been treated in a dismissive manner, and have to research these issues for themselves. I struggle to put thoughts into words, so really just want to express how very grateful I am for all the effort that has been put into this website
Brad 3rd March 2016
I was suffering badly from jerks, twitches, dissociation and eventually seizures for quite some time. I went to my GP, who referred me to the A&E where the neurologist decided to admit me for testing and observation. All tests were negative and the neurologist didn't want me go through some painful tests that weren't likely to show anything either. I told him before about my whole history and how the symptoms didn't get any better even on my best days. He then told me about functional neurological symptoms and gave me this website. I read trough all of it and it all made a lot of sense (more than any other neurological disease I ever read about). I'm back home for a week now and thanks to this website already improving a lot (no seizures since and only dissociation is still a bit of an issue), after months of fearing to lose my mind I can now move on with my life and continue where I left off.
I was wondering something however. I have read on another website that FND is believed to be caused by the CNS wrongfully 'translating' signals (from body to brain and from brain to body) but this statement didn't have any references to back this up. Do you believe this could be true or where to get more information about this
EDITOR (Dr Stone): In broad terms it is correct that FND occurs because of problems with messages coming from the brain to the body and vice versa. That is, in essence, why they are called functional disorders, because there is a disorder of nervous system functioning. Its not necessarily that messages are translated incorrectly, it is perhaps more accurate to say that the normal pathways that allow automatic movement have become corrupted, often with excessive and unco-ordinated brain activity. This abnormal activity may be automatic and have no relationship to psychological processes or conversely be influenced by thoughts or emotions. It really depends on the individual and the nature of the symptoms. You can read more about treatment including the role of medication at neurosymptoms.org
Anonymous 10th Feb 2016
Dear Dr Stone, I wished to thank you for this informative website. I may be less like others in that when functional symptoms first began to appear for me 10 years ago and a GP suggested my problems could be caused by mental health issues I accepted it first time, but I think I was prepared for this because I had a history of mental health problems so it seemed to make sense. One of the main problems I have now is convincing new GPs not to rerun old tests because they often find it hard to believe it is not physical, but I also understand their anxiety and they have to be cautious, of course. I don't know if you still answer questions but I wondered whether you have any knowledge of whether one psychological therapy appears to work better than another for functional symptoms? I have had a lot of psychological therapies over the years but I'm not sure many have made a large difference. If you have noticed that one form of therapy is particularly helpful for functional symptoms then I would be very interested to know. By the by, I had never thought of the myoclonus as functional (I have exhaustion, weakness, physical malaise/flu-like feelings, used to have dissociative "seizures" of a sort). I knew the jerks were stress-related but had always considered it to be probably an autonomic reaction of a "stressed brain" trying to prevent you from relaxing and therefore becoming more vulnerable to a perceived danger. But perhaps this is because my jerks - which I'm rather used to now - happen only if I attempt to relax in any way. It eventually goes away by itself if I ignore it. It seems to annoy the people around me a hell of a lot more than it annoys me!
EDITOR: Thanks for your feedback. When psychological therapy is appropriate, there isnt any clear evidence about which one is most effective. There is most evidence for cognitive behavioural therapy - where there are randomised clinical trials for dissociative seizures. If you have had many types of psychological therapy then longer term psychological therapy (including psychodynamic therapy or cognitive analytic therapy) may be helpful but it really depends on your circumstances and the therapies available to you locally.
Sarah 29th Jan 2016
After suffering with depression and anxiety, being fobbed off by two doctors but taken seriously by one, treated with cognitive behavioural therapy, intense counselling and medication that has been upped and lowered and then finally experiencing seizures after a period of panic attacks i thought what the heck is happening to me?? Now after 2 years, a ct scan an mri scan and an eeg and 3 consulatants i have ben told i have NEAD. Although there is now a name for my condition and my last scans were clear (which is fantastic news of course) it still didnt help me to confirm how to manage them, especially as my last consultant told me to visit this website to understand more( surely as a professional he should be able to tell me more!!) anyway now im being referred to ANOTHER specialist and was supposed to be referred for neuropsychology sessions but ill believe that when i see it . All this time i have had to stay off work for most of the 2 years as i work with children and this classed me as a "risk" . Fortunately i have read many stories on this site and now see im not alone this can be managed...as i know it can ive had near misses with no full on seizures ... but now i have more hope that i dont need to stop work completely....this isnt just " my bodys way of shutting down" or " in the mind" its real, understandable and managable. This site has done more for me in 15 mins than professionals have done in two years.....thanks!!!
David 26th Jan 2016
Thank you. I often feel alone with my symptoms and fears and this site, at the very least, alowed me the opportunity to see that there are others suffering and overcomming. I just want to have one normal day and i think i can handle it after that - I believe this will happen!
Dawnstar 22nd Jan 2016
I have had symptoms and had seen several doctors, neurologists, had so many tests to count. I was told it was all in my head or the symptoms were from stress! Drove me crazy because to me that is not a answer. I live in Maine so the options for treatment other than the feels of "take this medication and go away" or "your tests are all normal so it is in your head". I have had seizures; which was ruled out to be epileptic, hand tremors, bowel issues, insomnia and vertigo so bad I was laid up for months. I saw a neurologist yesterday who gave me this diagnosis. At first I was upset and felt I was being dismissed as it was all in my head or from stress again. He referred me to this website so I could better understand this diagnosis. I can't believe the amount of symproms that meet what I have been going through since I was sixteen and that have gotten progressively worse. For the first time I feel like I'm not alone or crazy! This website is amazing and I would recommend it to anyone who feels the same way I even used this website to have family members understand this diagnosis. Best medical website ever!
Rebekah 31st Dec 2015
Thanks for this website. My 8 yr old son has not been officially diagnosed with anything. He seems to tick some boxes for things but not for others. A year ago he had a bad virus (5 days of high fever) and experienced weakness in his legs, He complained of backache, joint pain, headaches, dizziness (room spinning), at 3 weeks he had to hold onto somthing to walk, at 5 weeks his left arm stopped working. He had an MRI and xrays, they suspected he had ADEM because of how he presented, but all tests came back fine. All reflexes were/are present. The left arm and right leg were were 1/5 in strength.. When he was asleep he moved his arm, They decided it may be psychosomatic, so we did intense physical therapy which actually worsened his condition and caused extreme anxiety. My husband felt it was "in his head" for sure, and thought he would just wake up and walk one day. We got rid of all stressors (started homeschooling (as he had school anxiety), and now a year later he can put weight on his left arm, but not grip or raise above shoulder. We kept searching for ways to help him to be more indepentant. He is stronger in his legs now, but still will not walk with touching something (often very lightly). He has been seeing a therapist as well for the last 6 months. What I found helpful about your site was the fact that it isn't "all in his mind" which i find so derogatory and I think having everyone including health professionals (at the beginning) saying he was doing it for attention was so hard to take! Also the advice for carers is helpful, even if he doesn't have this its still good to know! We haven't been to a neurologist since the beginning, and we are seeing a new pediatrician soon so hopefully, armed with a bit more information we can make some headway. Thanks
EDITOR: Thanks for your feedback. I hope the site can be helpful to you. It does need a more specific paediatric section as although much of the management is similar, some of the challenges are understandably different at this age
Angie 1st Dec 2015
A friend put me onto you site and I love it! I have been having seizures for 15 years now, but no doctor has been able to help. The last specialist actually laughed at me while I was having an attack and thought I was simply showing her something. I don't have a diganosis, but mine last for around 4-8 hours and with them I have vomiting and diarrhea with mine. They seem to come after I eat certain foods. I have diagnosed myself with fat malabsorption. If I have even coconut oil in food or on my skin I have an attack, often a few hours later. Severe pains in my neck and head and seizures where I cannot communicate at all. I feel like I'm pushed away from myself. It takes my digestive system days sometimes weeks to recover. Would love a diagnosis, but have been to so many doctors in Oz that I've given up. I've been put on heart meds (I had AF) and migrane meds, but went off them all. No difference on or off. Before an attack my heart goes into AF then tachycardia and there's n!
othing I can do to stop it. I was healthy until a severe case of food poisoning from seafood set this chain of events off 15 years ago. I would love feedback on my condition. Doctors in Australia are not helpful and I have lost all faith in them.
EDITOR: I cant offer a diagnosis Angie. If you do have a diagnosis of dissociative attacks then I'm glad if the site is useful to you
Karen 8th Nov 2015
Oh My! I wish I'd been pointed in the direction of this website MONTHS ago. I have had a lot of the issues mentioned for over two years and have only just got a diagnosis. I saw a neurologist who dismissed some of the symptoms as 'in my head'!!!! Grrrrr.... I am a 46 year old female who up until 2 years ago had a brilliant social life, went to the gym often, had a car all of which I have had to give up. The fatigue is horrendous. I have been taking Amitriptyline since May (low dosage) to help me sleep and it hasn't worked so far.Some days it's all I can do to get dressed. Other days I have a bit more energy, but not enough to lead a 'normal' life. I have been worrying constantly about work and about what other people think ie: I'm enjoying been off or 'pulling a fast one'.
Those who truly know me, know I hate being like this, hate being off work and HATE relying on people to help me. This website has made me feel so much better, knowing that other people are going through the same things AND more importnatly, explaining fully what is happening. I have finally been prescribed Pizotofen which I am hoping does the trick. Thank you very much for explaining everything. Best website ever