I did not appreciate a neurologist walking into my hospital room, snorting, "This is not neurology!" when I was still confused about what happened to me. When home, I used my long career in behavioral health to do research. I was grateful and vindicated to find FND Hope and other good research and treatment.
I am curious in to hear from others: What were you told about your symptoms before a diagnosis? Did you get helpful treatment? What was helpful? Did you continue to have symptoms after treatment?
Please do write me your life history. I need to keep this post just to your FND experience.
Smiles for a better day.
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RavenFeather
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Hi. I’m here on behalf of my 18 yr old daughter who was suddenly ill and diagnosed with FND in May 2024. We are in the UK.
She felt unwell with what she thought were symptoms of a cold/chest infection and just “didn’t feel right”. Within 4 days she ended up being taken to hospital by ambulance with stroke symptoms. Her voice and walking were both affected badly and she had weakness on one side. She had blood tests, ECG, EEG, camera down her throat, chest x Ray, head CT, head MRI and many neurological assessments to rule out other neurological illness.
After 4 days in hospital she was diagnosed with FND. The neurologist said she didn’t need a follow up with Neurology but would get outpatient neuro physiotherapy and that we should self refer for talking therapy. He said “I think you’ll be back to normal in 2 weeks”. We left the hospital with a daughter that couldn’t walk, hold her head up properly or talk smoothly., but the hospital discharge letter was positive and so we were hopeful.
Neuro physiotherapy on the NHS involved 2 home visits from an occupational therapist and one appointment with the physiotherapist My daughter was told “you look like you’re doing the right things so I don’t need to see you any more”. The talking therapy still hasn’t happened as the waiting list is so long
6 months have passed and my daughter’s speech is now normal apart from when she is very tired or stressed. Walking is a struggle all the time. She manages better with hiking poles as they give her balance and confidence that she won’t fall over. She has chronic hip pain and gets exhausted very quickly. We paid for sessions with a clinical psychologist and that helped with stress and dealing with difficult things, and we are currently paying for a private brain health/physio therapist who tells us that there is a lot of work to do to reconnect the neural pathways, but “it is all fixable”. He is working on ocular and vestibular cranial nerves which he says are not talking to each other and it is affecting her proprioception.
We remain hopeful but it is not a quick fix and we are struggling to pay for it all.
Fun fact: my daughter is training to be a professional ballet dancer and she can still dance perfectly. The explanation was that her brain enjoys dance so much that it brings happiness and therefore doesn’t block the neural pathways. She went back to ballet school in September, but it is a massive struggle to manage daily living and getting to school, so she isn’t sure if she can complete this year’s training.
I like your description of the brainhealth/physiotherapist ..sounds like a few of us here could do with help from one of those .. a neural fixer! ! is he a one off, or part of an organisation ..available where please?
I wonder if there is something about dancing that makes you disposed to FND ? You may have seen the youtube video from Jamie Lacelle, and there was another 'ice skating' story somewhere.
Yes, I’ve seen both of those videos. You may have a point about dance. Training is intense and the environment is competitive. You are always striving to be better and there is a big element of comparison and perfectionism all the time. However, the NHS neurologist said my daughter was predisposed to getting a neurological condition because her dad had (but is in remission from) Myasthenia Gravis. As with all FND questions, who knows?!
The private therapist we’ve been seeing is a zhealtheducation.com practitioner I can’t seem to share the link properly but look them up and you can Find A Trainer near you on their menu. We are nearest to Bristol. If you follow them on Instagram @zhealth_performance you’ll get some idea about what they do.
Sadly there are few contributors here who do not have frustrating stories about diagnosis/misdiagnosis or treatment/lack thereof. I think most folk on this forum have had to make considerable efforts themselves, either in modifications to their daily routine, or by seeking help outside of mainstream medical care. The general opinion being. 'no quick fix' , 'no standard treatment'. This forum probably offers more practical guidance, research links and DIY assistance than you will get elsewhere. You could look through some of the stories already posted .. I expect you will be mainly interested in treatment outcomes in the U.S...at least you have 'REACT', which offers some hope...so keep smiling.
What frustrates me is the medical community's lack of empathy and continuing ignorance when research is readily available now with diagnostic criteria and treatment plans. In their defense, it is difficult to keep up-to-date with their caseloads.
Sometimes our worst experience is the opening to a different life blessing. There is information to help us understand and be better faster. I draw from a long career as a hospital-based cognitive therapist specializing in trauma healing. My new focus is to continue learning and teaching about FND so as to refine a more effective treatment.
Welcome, I know you mentioned in your bio that you researched and know what you need to do on your path to recovery but I wondered if the group could shed give any additional help on your symptoms.
Also, on the flip side "literally" have you come across anyone in your career with reverse hallucinations? As I am struggling to manage my son's latest symptoms.
A shot in the dark,, I have just discovered 'rope flow', and via Dr Chatterjee, Lawrence van Lingen. Although his main focus is on running, I was heartened to read the following ..
'Rope flow can repattern fascia, decompress joints and help you unwind. In some it very powerfully calms down or balances your nervous system and can open up breath. In some it helps reframe your internal dialogue.
It looks a great fun external focus way of exercise which looks like it would help with grounding too. Thanks for sharing. I found the founder's (David Weck) interview utube video and I quote:
"The rope teaches you how to spiral and rotate and move with total co-ordination so you know where you are in space." - thinking may help with Proprioception and dizziness.
He goes on to say "its gross motor movement down to the hands and the feet, so its core movement but there is continuity with the hands and the feet and we believe in proximal core out but we also believe in distal to proximal in and its sort of like training balance. If I can control the chaos then I can organise and program in the fluidity, continuity, balance and timing." Now I have the whole puzzle solved and now I am not in pain.
It's good to read the theory of it all, but I can say from experience, it does something immediate to your body, I suspect via the fascia, as after a few figure eights with my arms, my vocalisations start up ..air coming through the voice box (no words). I hope this is short term 'pain' for long term gain..and it really is not onerous to do everyday.
I didn't realise you had already bought a rope. I found the site of the interviewer, UK based who sells the ropes, just need to find a replace to use them.
I haven't' bought a rope yet, but have been doing the movements.. and am impressed. Another site was saying how good the rope is for proprioception and interoception. Van Lingen says some folk with dyslexia have noticed improvement .. all linked to the pathways from the cerebellum. I think the rope is quite a discovery for FND, especially, as you say with the external focus. I will be interested to hear if anyone on the forum with weak limbs uses it and reports benefits. ..Today I made another discovery..watch this space.
They go on about dominant side and other side (can't recall name) but can see how it could help limb weaknesses. I guess you work on the dominant side and gradually add a few reps in on weaker side until able to transfer from left to right.
Thinking of purchasing the lighter rope as my son will probably want to do the reps fast.
Still struggling with upside down vision, headaches and hallucinations most mornings.
I am still looking into the ropes ..glad to hear your son is up for doing the moves ..more appealing to the young ones than yoga. Sorry to hear no progress on the vision problems.
I have no weakness in my limbs, just shaking , which I can override with movement, so no barriers to flow roping, which I hope will help with digestion issues and work off /calm the nervous energy inside me that makes my whole body shake, and maybe do something positive for the neural pathways.
This is more hopeful than the NHS, as the local MH Trust are refusing the referral from my GP, but now I have the name of an FND expert ( motor variety) at the Barberry, she is writing another letter in her 'furious' mode,. Fingers crossed.
It looks as if you are in the unique position of being able to judge whether cognitive therapy helps or not with FND.. although I recognise we can't generalise from one example as not all FND patients have issues needing cognitive therapy.
The more professionals we have batting on our side the better it will be for all FND patients, so hold the banner high, and please don't get blown away in the wind Ravenfeather.
Hi there, I started off with crab walking, 2017, always going left, bumping into walls, diagnosed 2018 after 3 neurologists. Mine is slow progression of symptoms, I focus on the symptoms not FND. I find if I look at my feet, it's difficult to move them, but if I focus on a spot on the wall it's easier. My physio is now using Parkinsons exercises, walking the plank, imaginary of course, is easier if I do marching on the spot first. Just taking one day at a time, give myself a day off every so often. Hope you are able to find what works for you. Loads of videos online. Take care. Moni
This reminds me of one of my visits to the ER. They were trying to place me within the hospital. Neurology ran past shouting "It's not one of mine". They brought in a psychiatrist and tried to persuade her to certify me (because I couldn't move or speak). She was shouting "I'm not going to certify her - she's not certifiable" (I now have it from an expert, lol). The they got some young guy from Internal Medicine to flirt with me because they thought I might respond to that. Honestly, it was a total farce. Finally, after 24 hours stuck in the ER, the hospitalist agreed to take me. Sorry if this sounds flippant, but my sense of humour has been the only thing keeping me sane during the past 8 years of this nonsense.
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why are dr’s so quick to say you have fnd
How do you get referred to the best FND specialist in the country If you are out of the area? I am willing to travel! 
Causes of FND - Trauma by medicine conflict
FND diagnosis and if you've been given help.
I’m done but in a good way
