Hi, recently a psychiatrist decided to put my FND diagnosis down as mental health related, just because I have past trauma and it is possible that can be a cause of it. I haven't had extensive tests to find out what could be the cause. I had a brain scan, a normal one. Not one to look at the nervous system which I was meant to have but they never gave me the injection. I had an ekg but that was it. I didn't have any blood tests to rule anything else out. I've asked to see a neurologist to talk about things but I never get any reply. And the psychiatrist is always just deciding things about me based usually on things she has misunderstood, I am on the autistic spectrum and I don't react or think etc like most other people. Yet she treats me as though I do, wheelchair ends up in her jumping to conclusions about what she thinks I am thinking which are way off the mark etc and instead of asking me to clarify something she just go's ahead with her assuming.
I just wanted to know if it was normal to suddenly have your FND diagnosis put down as mental health related without having all the proper tests? She says they couldn't find the cause. Which is true. From what little they have tried. If it is caused by past trauma then fine. I just wanted to be sure there isn't t anything physical causing it first. And as I was also wondering if it was normal to have it put down as a mental health diagnosis at all? I'm in the UK if this helps.
Thanks
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Charlie1988
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I am sorry to read of your struggles with the medical profession. Since FND is rare. It is not well understood. Advocating for yourself is often required. I am in the USA, so I don’t know the UK medical system. I was bounced around from doctor to doctor. Each specialist focused on my symptoms that fit into their area of expertise.
I asked every doctor to explain why I would suddenly have a large list of seemingly unrelated symptoms begin at the same time. What would cause this?. Only the brain. The actual structure? Perception? The chemicals or electrical impulses? What, what, what? No doc knew. Symptoms were attempted to be treated individually. Finally, I went to a general neurologist for the severe headaches. Migraines were suspected. After several scans and blood tests came back normal, she recommended that I contact a movement specialist. Thank God this man listened to everything! He diagnosed the FND after two 1.5 hr appointments with him. I was evaluated on a lot of movements, extensive questioning, and psychological history.
The take away is to keep holding your psychiatrist accountable. Push for answers. Question the doctor. FND used to be called Conversion disorder and was listed under psychiatry. In the new updated medical Bible, DSM-5, it is discussed.
I wish you well in your fight for seeing a neurologist. Arm yourself with as much research that you can do on your own. Never give up.
Hi Charlie, I think it is presumptuous by your psychiatric to say your fn d is solely linked to a mental health issue, although in some cases a previous trauma can trigger symptoms.To assume what your thinking is ludicrous.I would push to see a neurologist who specialises in fn d too work out the best way to treat your symptoms.For some access to help is not very good as in my case,I am 4 years down the line and accept there is no cure for fn d but we still have the right to help and support with our condition to get the best possible outcome.
Firstly luv NOOOOO it's nothing to do with MENTAL HEALTH. When I was in hostipal for 5 wks I had a great wee team with me that's wene they digonsed me with F. N.D and my neuropycoligist firstly told the psyc doctor that under no circumstances it isn't related to mental health. So keep that in mind when going forward luv xx
Thank you so much. I was in hospital and the neurologist I saw who diagnosed me told me it is physical and real and to do with the nervous system not sending and receiving signals properly and then the brain not being able to intemperate them correctly. He explained it like a computer with too many tabs open and going haywire. He was brilliant. But since then a psychiatrist has put it down as a mental health diagnosis. I didn't have all the tests you should have to rule things out in the first place and i have been asking to see a neurologist again to go over things as at the time I had never heard of FND and now there are things I would like to discuss and I want to make sure I have had all the possible tests rule everything out etc that I am entitled to. But I also has ASD and things and I can't verbally communicate well or stand up for myself. And I struggle with people and things. So I haven't gotten anywhere. Also with the way I have been treated over the years by health care professionals I am scared to speak out for myself and generally scared of them and the setting. It is almost like I'm wondering if it is even worth putting myself through all the stress of them treating me the way they do and things if it is likely they won't find anything or be able to help. Or even this they could help or find anything it may just be best to suffer in silence as I normally do as honestly the way people are towards me is somewhat shocking and I can't cope with it or know what to do. Sorry for the long ramble. I am not expecting you to have any answers. I am just explained and expressing my frustration and things. I do apologise
I'm the same luv with docs it's like wene ya go in there like oh here she comes again gs, but no seriously that's there job to look out for us but to even get a appointment it's scandalous. I was promised wene I was in hostipal that they were going to get a rumetoligiost to look at me cause I'm experiencing alot of lupas signs from I was in my early 20s and they were like yeah that's sorted and I was hoping then I phoned and they haven't even put in a referral gs so nii I'm having to double bck on my gp for answers and refrells wene again that's stressfull on its own and again the look off disgust wene u eventually get a appointment but I'm not going to the hostipal again it's like girl suck it up and get on with it, buts it's hard wene ur stuck in a wheelchair most days cause ur legs don't have strength and u can't walk for them to say yeah there nothing wee can do only give ya some reachserch and thats that. Sorry for my rant but its good to get it out luv, and ur not alone talk anytime and hopefully ya get to see a neurologicalist sinner rather than later luv cause its draining xx and merry Christmas x
I can relate to frustrations in getting your point across to medical professionals. My FND has made my speech more difficult, confusion, and my train of thought easily disrupted. However, I have no difficulty writing.
In order to explain FND to my primary care, sleep doc, opthomologist, psychiatrist, psychologist, PT, OT, and Speech therapists, I organized a 3-ring notebook. I have lent it to all the professionals I see so that they can read it and learn. After each person had the notebook for a week, I asked what he/she thought about the information. Were there any questions that the notebook didn’t address. This way, I could find out who actually read it, and who I had to remind that this is very important in understanding their patient.
The notebook is divided into sections:
- official diagnosis by neurologist and citing the hospital, doctor’s credentials and any literature he has written
- all notes from neurologist from each visit as well as his summary
- listing of all tests conducted and results
- all therapies I am engaged in and any notes they have regarding my attendance, effort put forth, progress (or not), areas of concern
- references to resources, medical books, scholarly articles, research already conducted or being conducted by major, well-renowned hospitals
- from my neurologist’s opinion, what reference materials does he find most useful and are clearly written (much is in medical terminology but this notebook is intended to inform medical personnel)
- researched and directed the reader to review material from well known, highly respected doctors who specialize in movement disorders and especially FND.
- my personal description of what I am experiencing with FND and it’s impact on my life as well as family. In this description, I broke down the components.
—- overview
—- physical symptoms and their direct effect on my quality of life
—- cognitive symptoms and their direct effect
—- emotional response to above categories
—- my personal outlook on my life now and long term
—- my past and current affect and any changes along my journey
—- all coping skills and behavior modifications (having others drive me because of vision issue)learned from the various professionals
—- support groups I am involved in
Yes, it is A LOT. Yes, it took a tremendous amount of effort and time. It is continually evolving. I took on this project as a means of self-advocacy and method to inform medical people of FND. Purposefully, I opened with clinical information. After the reader took in that information, I hoped he/she would have a medical mindset about my personal journey and impact of FND. I could never have spoken much of this. I was especially careful to demonstrate and prove that I’m serious about my disorder.
A professionally appearing, well organized approach prompts doctors and therapists to take FND seriously and take ME seriously.
After all, it’s my life! I am fighting for medical acceptance and willing to work hard at improving my quality of life.
I hope this long read has helped in some way. Well wishes,
That sounds like a great idea. I also struggle to make myself understood, easily swayed . I do keep brief notes in my phone as I don't remember, or forget words. At the moment it's a struggle to get to see anyone, covid has finally hit Australia with a vengeance. It's just a matter of coping with the symptoms. I might try your way. Take care. Moni
There are still too many neurologists as well as psychiatrists with the "it's all in your head" approach. Sadly some are even doubling down on their out dated thoughts, even though they have been refuted many times over. FND Hope UK offers advocacy for patients.
I have a history of trauma and if you played bingo with the list, I'd say I had a full house. My symptoms were in the end down to my asthma/ sulphite intolerance which led to histamine intolerance, combined with thyroid antibodies and B12 insufficiency. I could have talked until the cows came home, there was nothing going to change. I now have a special diet and supplements in order to keep my symptoms under control.
I'm not sure if histamine intolerance is a problem for people on the autistic spectrum. Perhaps if you have allergies or if you research about histamine and autism and there's a link, you may be able to put a good case forward for being referred to a neurologist/neuropsychiatrist and/or an immunologist. FND Hope will have a list of people specialising in FND - though I do warn you that there's a long waiting list and some will be better than others - beware of the one at Liverpool she takes the wrong approach, quite why she is on the list god alone knows, probably because they offer the physio for FND movement disorders.
Histamine is a neurotransmitter, it regulates the release of other neurotransmitters too, including - if I may be technical and boring - acetylcholine - not in itself a problem, the problem for people with FND is the glutamate that is co-released with it. Glutamate builds up in the areas of the brain responsible for FND.
I'm not saying talking won't help you. I know it can make some people worse and other's better. I think everyone with FND needs an understanding ear - trouble is we don't always get it. People annoy and upset us which aggravates our symptoms and they see it as proof, rather than it being a result of how brains work neuro chemically. Relaxation techniques, stress reduction whether it be knitting, mindfulness/meditation or whatever takes your fancy, can be of use, because de-stressing reduces histamine release.
One day I shall write a book! I've had to patch all this together on my own. I've taken what was known about FND and my other health issues and tailor made an answer that fits me. I've tried many things that haven't worked and it's not cheap to do so.
Unfortunately there is not a panacea. My answers may not be your answers, but perhaps start researching yourself if you feel up to it- you'll have a long wait for a consultant. I tend to fact check websites with google scholar. there are some odd bods out there.
Thanks please do write a book! Did you have a good resource i could read further about glutamate and fnd. I've read a bit about excessive glutamate from another perspective (trying to understand why I had such shocking side effects from a type of corticosteroid medication).
Hi I used to follow FND specialists on twitter and they would have their papers to read free for a few weeks. I've had to sort of break it down so I can understand it. Lots of looking up words and head scratching. I found, as someone with a sulphite sensitivity that steroids makes you more sensitive to sulphites. I developed FND movement disorder after an asthma attack and treatment with steroids and inhalers. I also found that sulphites were in all inhalers! No wonder I never tolerated them. I'd get worse rather than better.
Mostly I wonder around google scholar and sometimes it's more good luck that judgement that I find something out.
Why are there sulphites in inhalers, and why did no prescribing doctor notice, oh my goodness. Try copying and pasting unavailable journal links in here. sci-hub.hkvisa.net/
Thanks for the link. I don't know why they don't know. It's supposed to be that the drug in the inhaler undoes the damage done by the preservative. Trouble is when you are very allergic to it, the drugs don't work, they just make it worse. So I'm an asthmatic that can't have inhalers or steroids. Thankfully you can prevent most asthma attacks with high daily dose of B12. I had to find that out for myself and pay for my own daily B12 injections as I can't get them prescribed.
What gets me is that even on the inhaler ingredient sheet, there is no mention of sulphites on the there.
Sadly, yes this is unfortunately the usual route most doctors take with FND.
It took me almost 15 years to find a neurologist versed and specializing in fnd to diagnose me with it on paper. The neurologist also has to look for the patterns that match up with non epileptic seizures.
I have 3 different types of seizures that I have to deal with. Ask about Lamotrigine to see if it can help you. If it does, your psychiatrist will be forced to consider that this isn't in your mind. Don't let them do Cognitive Behavior Therapy or Biofeedback therapy on you. Chances are, it will either make your attacks worse or set you off instantly.
I also have frequent migraines and I have panic attacks which are rare thankfully.
It took me 11 years to find a psychiatrist that didn't put this down as mental or just as in my head. Stress can make the attacks worse but, you have to play their games to prove that you can't have an attack on command and that this is not psychosomatic or accuse meof fakingmy attacks.
The trauma is there but, what they do not understand is what it is like to have to deal with this daily and how debilitating it is.
I just recently got a little bit of my life back and just got my first job. I started dealing with the attacks my freshman year of high school.
Thank you for your reply. I was diagnosed in hospital by a neurologist. Then a psychiatrist changed it to a mental health diagnosis. It is constant and yes some days are worse than others and I have stutters and things, that I've never had before. I got continuous migraines a few years ago then the tremors and weakness and stutter etc started the 18th February this year (2021 for anyone seeing this later) and the neurologist specifically said to me it is real and it is my nervous system malfunctioning and my brain not interpretating the signals correctly, explained it like a computer with too many tabs open and going haywire. But now I can't seem to even get an appointment with a neurologist to even discuss anything again as the first time it was only a week or so after it started and I had never even heard of FND. Now I obviously have questions and things. But as I said I can't seem to even get a referral. I have twitches in my left eye a lot of the time randomly for a while that come and go and that you can see are obviously not put on or faked. The top eye lid and the bottom eye lid. I hold my eye open and it does it of its own accord. I am sure I would be aware if I was doing it on purpose. Though I'll admit there are times I sit and wonder if it is really all in my head and they are right, maybe I am doing it on purpose. Then I remember all the times I've been told I'm making things up, doing things for attention and can't possibly be in that much pain etc then am diagnosed with endometriosis after having my appendix removed in emergency surgery for one thing, after I was just being to believe them that the pain and everything that I had been having since I was a young teenager was all in my head and maybe I was just attention seeking even though it isn't in my nature. Perhaps I was doing it unconsciously. It is scary how these "professionals" can get under your skin and make you question yourself and your own body over the years because of the way they treat you over the years. Thank you for you help.
I appreciate your reply, I too have been accused of faking my non epileptic seizures and that they were all in my head. The website that I put explains things very well and the symptoms are listed very clearly. I wish you the best of luck and I hope that your attacks ease up a bit and that you will find a neurologist that will give you positive answers.
I think it helps having a doctor who is validating, time for a new one?
Trauma can be a trigger, one of many. Trauma falls into the not controllable basket but there are others where you can influence and make change so I try not to think about the first and focus on the latter.
Have you thought about autism? Some good posts on here about possible link between autism and fnd.... and I've read some info about autism/neuropsychiatric diagnoses as a risk factor for PD. See introduction section in this article journals.sagepub.com/doi/fu...
Sometimes I wonder if fnd is a waiting bay for another diagnosis. But I'm not holding my breath. Once there was someone who was so unwell they couldn't get out of bed, slept most the day and were catheterised. It was abundantly clear they loved their children and would have done anything to be in a position to spend more time with them but the diagnosis was still fnd even at that point.
With time, and changing approaches to everyday life(a lot of good info on here) it is possible to experience reductions in severity/intensity of symptoms.
Trust your gut as to what works for you and what doesn't.
I have ASD and weakness and stiffness and wonder if it is parkinson's. Since parkinson's is misunderstood, no definite tests and can not be seen on mri until damage using done
Hi Charlie I hope they can send you to a neurologist as they seem to be the only doctors that listen and I hope they get you into some sort of physio as unfortunately it's been left to late for me, doctors seem to be quick enough to blame mental health for so much these days without looking into the actual cause.
My neurologist explained my fnd to me like this I don't know if this will help but it did me to understand it. Think of an umbrella at the top you have fnd and then you have the lines holding it together think of the lines as a different illness that you have for me line 1 is my spondylosis, line 2 is my knee and hip problems and line 3 is my hyper mobility syndrome. So these cause my fnd all together. Doctors only treat the fnd they don't treat each element of the fnd individually which surely would make more sense to combat the pain. I don't know im not a doctor but I keep throwing ideas around with people because I know it's to late for me but if it helps someone else in anyway I'm happy to help because 8 years ago I never thought I'd be in this crappy position not knowing from day to day how my body is going to react. I'm sorry I can't be anymore help but if you ever need to chat just message me.
My story if you're interested is that I have had FND now for close on 8 YEARS I have had doctors basically look at me like I was faking it. Then there's been the doctors that have put it down to my past as I had a mental breakdown over 15 years ago so was sent to see a psychiatrist to have a psychiatric evaluation again. Then when it came back negative I was sent for mri and ct scans aswell as an emg which again all came back negative, but did find out I had a straight spine with no curvature at the bottom of it and spondolosis but not enough to cause any problems of course. Then sent to rheumatology who was the first doctor to say something was actually wrong due to me having no control of my knee reflexes this was after about 4 and a half years of searching for answers but they told me there was nothing they could do so was sent to neurology who tell me to basically keep taking the tablets there's nothing else we can do and that my fnd is just going to get worse.
Sorry to hear way you been treated so far. It is unacceptable. Many of us here have been through this. I stood my ground and saw 3 neurologists before got good one. If you not happy, research for good one in your area and get gp to refer you. There are many more tests you can have before being told mental health issues. In my case some of the physical issues not being addressed can lead to strain on mental health. We are all different, keep fighting till you are happy with the answers. Pro. Mark Edwards @ St. Georges hospital Tooting, London is good.
I found what you wrote to be clear and very reasonable. It sounds like you have good instincts about yourself and health.
In my case I have had several MRI’s and was seen by two neurologists, one who specializes in movement. Due to Covid his initial consultation was on Skype, He upheld the previous neurologist’s assumption that I had dystonia which could be treated with Botox. That never seemed right to me, and I clearly and repeatedly told Him. Long story short, wait 6 months, travel 3 hours for an appointment, then He agrees, not dystonia after all, go find a good physiotherapist and get on this support site.
My symptoms, left leg impairment, have slowly worsened.
Bottom line is they don’t really know!
I have read that past traumas can contribute to FND.
For me, I am doing what I can to be healthy in my Spirit, Soul and Body.
I don’t know if this answered your question at all, but you sound wise and will know your own body best.
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