I’m new here. I’m not sure whether I’ve got FND or not. Neurologists say yes, and psychiatrists reply I’ve not psych problem. And my GP is perplexed. Apparently, it often happens, and the diagnosis of FND can be made without psychiatric/psychological triggers, nor a defined trauma or stressing life event.
But I’m wondering then, why it classified in DSM? It doesn’t look in that case relevant to psychiatry!!
Did someone experiment CBT with the same background, and was it effective to them?
Here in France, psychoanalysis is still predominant, and it’s very difficult to obtain valuable information!
Thanks, Seccotine
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Seccotine
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There is a group of us in the FND bucket of life that have no physiological trauma in our life.
This in not to say that there is not a collection of small incidences that have an accumulative effect.
Has the neurologist performed a Video EEG? Have they recorded one of your seizures and seen no change in your brain pattern prior to the siezure. Then they make the diagnosis that you FND. Very simple for them.
Thus in their terms rules out you have epilepsy and they feel they need to give your condition a name.
You will find that the issues may be caused by a lot of other illnesses and also allergy to foods and so on.
You are at a starting point in your journey and the road is long and some people may be there to assist
though you are your best carer and you will work out ways to manage the issues as they arise or suppress
the symptoms. There are two closed forums on facebook that are worth joining.
I have real problems with fnd diagnosis.neuro isn't able to dx so they say its psychiatric and drop you.there are so many dx that used to be psych.ie parkinsons,ms ect..they treat migraines ,and a lot of diseases are made worse by stress.why cant we be treated with concern and respect.WE DONT HAVE THE TECH.TO DIAGNOSE YOU BUT WE WILL MANAGE YOUR SYMPTOMS AND TEACH SOM RELAXATION IDEAS..imho
Hi Seccotine, the sad true is - even if psychiatrists say "no", most probably it will not be convincing for neurologists. In fact, the majority of FND patients do not have any psychological problem underlying their illness. Unfortunately, currently neither neurologists, no psychiatrists know what to do with such patients. The experience of many people shows that 1) you will unlikely ever know for sure whether your symptoms are purely functional or organic, unless some test finally shows something positive and 2) most likely you will bounce between neurology and psychiatry until you are exhausted. So, the most reasonable way for you would be to develop your own treatment program based, perhaps, on some psychotherapy, some physical therapy and other things together (look at the website neurosymptoms.org for details), taking advantage of both specialties, and the best type of a doctor to manage your condition would be, probably, a general practitioner.
Thanks all for your answers. By the way, I didn’t even tell you what my symptoms are, I don’t suffer from seizures. I have muscle weakness, gait problems, a great post-effort fatigue and an overactive bladder. And nothing on the MRI...
Trying to do on my own is what I’m starting to do… I see a physiologist, he helps maintaining my muscles. When I’m not tired, I can now walk quite normally for a few meters. But when tired, I have no balance, and I have difficulty coordinating my legs. The CBT psychologist I met told me she could hardly be helpful as we couldn’t make any relations between my symptoms and stress. My GP believes I have no psychological problems, that’s a good point!
I knew I had to be patient, but listening to you, I shouldn’t expect any response before a long time, if not ever! Whaoww, that’s a bit perturbing, but I think I know you’re right, and I thus should try to tame my optimism, which is in that situation a bit of a handicap!!!
The next step for me is trying to go back to work (part time), but with no diagnosis on board, it's gonna be complecated! I won't be able to do my previous job (teacher with 6-7 year old kids) which is heartbreaking, because I really enjoyed it.
Hi Seccotine, I think I can relate to you in my symptoms which are slowly progressing generalized muscle weakness and the great fatigue you mention (it started as a post-effort fatigue, but, as I can not exert any decent physical effort in the last couple of years, it has become just a fatigue). I tried quite a bit of physical therapy, but, by some unknown reason, in my case it makes things worse. If you do not feel any psychological disturbance yourself, I would not recommend wasting your time and money on psychiatrists, those of them who are honest tell plainly there is nothing they can do for an FND patient without a history of a psychological trauma. As for your optimism and for your job - I wish you do not lose both)) even if one does not get better, there are always options for adaptation. Perhaps, you can find a job or modify your job so that it does not need a great physical activity. There are also things that help with walking, driving etc. I personally did not quit my job of a scientist and still work full time. I use anticholinesterase inhibitors which boost my muscle strength to the point that I can walk a short distance with crutches, I use prismatic glasses for double vision and a special device to drive with weak arms - I am not ready to surrender)) Take care. Svetlana.
I've been diagnosed as FND by my neurologist, but my clinical psychologist said she doesn't think it's FND. So I'm in the same position of not knowing what to think about my diagnosis. So far in therapy we have found no history of psychological trauma which would have precipitated my illness. I do think, however, that, at the very least, struggling with this illness causes depression and anxiety and that seeing someone can be helpful in that respect. Just my humble opinion,
Trophywife, that can't be cmt muscular dystrophy, I had a clear EMG.
Kotovasv, that's great you kept on working! Is your job adapted?
I totally agree with you FeatherDrag, that condition is sometimes difficult to live, and the psychologist left the door unlocked in case I feel distressed by the situation. In your case, so, where are you with those two contradictory opinions?
There are a few strange things that don't fit with a FND diagnostic, but the neurologist ignored them: brisk reflexes on both legs, a positiv Hoffman reflex and spasticity. For Babinski sign, my toes should go down (normal reflex) or up (positiv), but they don't move at all!
Hi Seccotine, I think your and my condition have something in common. I also have a clear EMG with symptoms which point out to a muscle disease. I also have brisk reflexes (they are not ignored, but it only makes things worse, because weakness in the neuropathy/myopathy should be associated with lowered, not increased, reflexes. Brisk reflexes are typical for brain/spine damage). I have a positive Hoffmann sign, as for Babinsky sign - I have it like yours, but toes not moving is a variant of normal reflex, so ignore it. I do not have spasticity, though. If you have a combination of spasticity/weakness, look for a condition called primary lateral sclerosis, check if you may have it. As for my work - I am a microscopist, my instrument is controlled by the computer, the sample preparation does not require any strength. The most complicated part is to reach my workplace, because my walking is really bad now, only very short distance on crutches, plus I do not have a lift both at home and at work and have to somehow climb stairs. But I still hope to work until I can not do all this. Good luck!
I think I’ve an answer to my question. I just received a book I had ordered called “overcoming functional neurological symptoms, CBT workbook”. I had seen that there were a lot of things about thoughts and feelings, nevertheless there was some stuff devoted to help coping the physical symptoms. But I really felt disappointed and bitter with its content.
-First, the authors address us as if we were 6 years old or had a low IQ, and that struck me even if I’m not a native English speaker! The tone is definitely patronizing and paternalistic. “read the story of Jane or David or Caroline... ho, nooo! They have unhelpful thoughts! What should have they done?” Arggg, I can’t stand that tone!!! I wouldn’t have dared talking that way to my 6-7 year old pupils…
An example here, (I don’t know if I am to cry or laugh!)
“David sits with a piece of paper and thinks about possible ways he could start to increase the distance he walks. Read David’s list below:
-Get Anne to drop me off miles away from the house and I’d have to walk home.
-Walk around the golf course with my friend Jim
-Try to walk a bit further than I am just now
-Ask the doctor if a wheelchair or walking aid would be suitable.”
And, what a suspense, which of these solutions are suitable??? I don’t know how I could have handled that problem by my own. Hopefully, “overcoming functional neurological symptoms, CBT workbook” is here to help me take the right decision!
-The other thing is that the book never allude to a psychological trigger for FND, but the whole book is about unhelpful thoughts, avoidance of situations linked to our fears and so on. The whole thing is totally hypocritical!
I don’t deny that some people are stuck in feelings that don’t help, (and I am often doing wrongly) and that psychological problems are worsening things but pretending that only with changing our thoughts and behavior we will recover seems to me magical thinking. Or I should be cured yet, because I had never ever felt things like “I’ll never get better”, felt hopeless, never used always and never to summarize things… And avoidance as the cause of all our problems... causing our muscles to go weaker and weaker... But at he same time, we are told that if we overdo, we are wrong either! Heads we win, tails you lose. Personally, if I don’t do something, it’s not that I’m afraid of it, avoiding it (or am too lazy…) it’s because, I have yet tried and tried, and that wasn’t possible. And I don’t give up, I know that when I’m in a good day, I’ll try again. But I’ve learnt that doing it in certain circumstances doesn’t help at all! And I didn't needed to be told in that childish way.
Grrrr, dustbin!
And thanks kotovasv for your testimony. Going back to work is going to be a hard task for me, because of administrative complexities, but I'll try not to surender!
Hi Seccotine, I am sorry for being rude, but, to my opinion, all the "healing one's mind" crap is not good even as a bathroom reading. If you want, I can send you normal scientific papers on FND, written by the neurologist experts for neurologists. Just let me know, my e-mail is slkotova@mail.ru. Also, have a look at Dr. Stone's website on FND neurosymptoms.org, it is a serious reading. If you are interested, I would be happy to talk to you over e-mail, I like your approach to the problem))
I found this book very belittling and condescending. It was so disheartening to read this is what they think of people with FND. I was part of the clinical trial at the NIH for this book and I was very clear about my disliking. Those that are ill with any illness need to feel empowered to be the best they can be, not belittled and talked down to. After the David story I refused to read any more of their scenarios. Out of the 500 people with this illness I have had the chance to come in contact with none act like David. I am glad I am not the only one who has felt it was complete rubbish.
I'm in the states..my old neurologist said psychogenic disorder with Dystonia, went through continued counseling which I already was in and was told no I don't have any type of conversion disorder. Then this month I was told fnd but I didn't need counseling but pt may or may not help. Psychogenic or conversion disorder have a psychological basis here in the us where fnd does not always. Depends on the dr. Hope this helps.
I am glad your doctor is getting you PT. Conversion Disorder is listed as the same illness as FND in the coding book. Luckily doctors are beginning to see there is often no converted trauma connection. We are always looking for doctors for other patients especially here in the states If you don't mind sharing your doctors contact name please message me or email me at bridget@fndhope.org thank you.
Hi all, I'm newly diagnosed with fndive seen a psychiatrist in hospital who said I'm not depressed or stressed I originally went to a gp because I felt unwell. It seems I'm now just in limbo land now I push my self everyday but as the day goes on I deteriorate, if I sit not move or speak I'm fine it seems reading all the posts and Web sites that things don't improve for anyone I to am about to lose my job and my business. I decorate cakes and can't do it to the required standard please point me in the right direction. Many thanks in anticipation. X
Not sure how many people are using this site, as I see no replies to your post. You may wish to join Facebook, if you don't already belong, as there are at least two active FND groups there.
What resonates for me in your note is the statement "I push myself every day bus as the day goes on I deteriorate…" - the first months before my diagnosis were like that for me. I kept pushing and trying and the harder I tried the worse things became.
While FND can resolve rapidly for some people, for others it does not (and remember, the people on the internet tend to be the ones with more severe symptoms and who have not recovered - those who recover generally move on). Unfortunately no one will be able to tell you what your journey is going to be. FND is a broadly defined collection of symptoms, not something clear cut like a broken arm, or a clogged artery. Those of us with a FND diagnosis, might have vastly different illnesses that will someday be better understood, but for now, we are all lumped together linked more by what current science doesn't understand than a more well defined diagnosis like a broken arm.
But, neurological problems do have a lot of overlap, and treatments for a stroke or a concussion for example can be applicable to someone with FND. One thing I do at the beginning of a flare up is cut out my stimulation just like people who are dealing with post concussion symptoms. Sometimes the brain/nervous system needs time to rest and recover. I mention this, because by pushing yourself you may not be giving your brain the time it needs to heal. If you had a stroke or a concussion would you be pushing yourself right now? An FND diagnosis doesn't mean you are any less in need of time to recover than you would be from any other major illness.
Can you take time off (medical leave) to give your brain and nervous system some time to recover? Can you put a plan in place that will give you some time to heal?
One of the hardest parts of all of FND, is that there isn't a clearly defined path to wellness. But you are not alone. And you will learn to heal and adapt to your new challenges. And whatever your future holds, I believe you will make it into something positive.
Hi Seccotine - I am doing DBT Therapy that has 4 components to it. Dialectical Behavior Therapy. and Hypnosis. I guess I had the " good fortune" of having a brain tumor and a dual diagnosis of epilepsy and non electrical seizures so I was able to move through the system faster. The idea of the DBT therapy is to regulate areas of the brain that overreact to stimuli. While the therapy is designed for those with true psychological issues it also works for us giving us tactics and strategy to control or abort some of our symptoms. Mindfulness is also interlaced into the therapy to teach calming and focusing. I never reacted to stress before the surgery and now the least little bit will tip me over- so I am learning how to identify stress and triggers for me. Hope this helps.
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