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.
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.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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
