my wife was diagnosed with FND a month ago after havens been ill for a few days before with bad abdominal pains (time of month) and feeling spaced out , long story short after numerous visit to local A&E only to be sent home being told everything is fine , she then had a 20 minute full on seizure to be taken to Lincoln A&E to be given a CT scan to be told nothing we can do everything is ok , trip to local GP we was referred to Nottingham queens , long wait but brilliant, neurologist seen us told us it was fnd and he would be in contact with us , she’s had a EEG done and now waiting on the results
My question is has anyone been misdiagnosed with fnd as a lot of the symptoms mimic epilepsy
Also have peoples symptoms got worse , my wife has now started with facial expressions and verbal tics
Thank you
Written by
Martin1974
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I have read here of more than one misdiagnosis, but the brain scan should be able to tell whether it's epilepsy or not from the electrical brain activity. With FND the scans come back as 'normal' .. they don't reveal what is wrong with the brain network, just confirm there is no physical damage. Symptoms for FND come and go .. or maybe don't go. Far from a happy state of affairs .. my sympathies on your journey.
Hi, we are a year down the road of fnd. My family member started with the same symptoms as your wife. Non epileptic seizures then facial movements and then progressed to full on spasms and movement disorder. Neurologists can usually tell if seizures are epileptic by witnessing an attack. An EEG will confirm. I wish you all the best and remember to look after yourself.
I’m sorry to hear your wife has started being so unwell, but glad you have sought help this way.
I started being unwell and then had multiple seizures in a very short space of time and was diagnosed with NEAD / FND. I had 3-4 months off work because the seizures were happening multiple times a day for weeks. I saw a neurologist who watched a video or me having a seizure, did a mri on my brain and a video eeg where they try to induce a seizure to catch it on the video eeg so they can observe as to whether or not there is any electrical activity disturbance when the seizure happens. If there is it’s epilepsy of there isn’t then it’s FND or psychological. Once you have the diagnosis you can then start with treatment.
For me the cause was and insurmountable amount of stress, built up over several years and then some previous trauma as well so complex PTSD. I have had a year of intense therapy now, I’ve overhauled my life to reduce the stress, I’ve quit my job I now do something much less stressful and I have had to really change everything to just make sure I make my health a priority (reduce stress, live peacefully, meditate every day, practice yoga, psychotherapy weekly, good diet no alcohol as it kills brain cells, regular exercise when possible, also putting in boundaries for people and situations that may bring about stress, so knowing when to put yourself first and retreat).
After a year my seizures have now reduced massively, I get some warning sizes but because of the therapy and also the research I have done myself of this condition, I recognise the situations that trigger my seizures, I know what sequence of symptom signs that happen Before I go into a seizure and by recognising them I have been able to stop many seizures from happening using my grounding techniques and breathwork. This was a huge breakthrough because it gives me back some of the control. I am now starting to get my life back, but it’s been a very difficult and sometimes dark road.
I wish you and your wife all the best, I hope her symptoms start to improve. If the above changes are not made, if your wife doesn’t listen to what her body is telling her, then the symptoms are more likely to get worse and progress. So hopefully with getting the results from the neurologist and some guidance and advice from them, she will be able to start getting treatment. If you can afford it, starting counselling immediately will help, that and taking some time out of work until she’s feeling better and having less symptoms.
also Martin, this situation can put a huge amount of stress on the people looking after the FND sufferer, so make sure you are looking after yourself aswell.
At this time your wife needs tlc, a stress free environment and for people to understand at the moment she is not in control of what is happening and is not her fault.
When I saw different medical professionals in A&E and also the paramedics that visited, the ones who treated me badly as if I was causing this to myself when I was seizuring it made me worse, because most people who have FND have suffered a lot of pain, in some way shape or form, so to be treated badly at this time just exacerbates the situations and symptoms. It makes a huge difference to the patient when they are treated with kindness and respect and listened to, but unfortunately some medical professionals do the opposite so try to ignore those, it’s through lack of understanding and ignorance, so just ignore them and give your wife the support she needs.
If you haven’t already take a look at these websites, they will give you a better understanding of the condition and the treatment for it:-
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