So according to Neurosymptoms.org there is "Brain Imaging and other studies starting to show us how and why the nervous system goes wrong" (see image; screenshot from website). Has anyone experienced this as part of their diagnosis or ongoing investigation?
I'm still flabbergasted after being told I have FND before an EEG and eight-week wait before being given the opportunity to ask any further questions about my diagnosis. If anything, the stress triggering or contributing to another episode.
I would love to learn more about haw this is done and how widespread the knowledge is. I was diagnosed 2 and a half years ago and my MRI of my head was clear…
Look at that :
sciencedirect.com/science/a...
Many thanks. To quote the article, I think this may certainly highlight the current problem, "The diagnosis is made based on reliable positive clinical signs, but clinicians often require additional time- and cost consuming medical tests and examinations." and I've only had a handful of appointments and a history that probably would make it almost impossible to rule other factors. As for the rest of the article my (albeit very limited - next to no) understanding of this field, tells me there is someway to go - including accuracy and data a center against which data can be analysed. Having said that AI has taken huge leaps and bounds, so in expect time and money, as with most things in 'life' are barriers.
Fingers crossed!
Ive had a mri which showed a Leison but as it was only one and the neuro called it a mere scratch and a EGG which showed some slight change in the right side in which again neuro said oh must of been a fault with the machine and i still got smacked with label of FND like a parsnip would get slapped witha ticket in sainsburys and sent on my way. Yes i have been fighting this for over 8 years abd got no where just told you have FND nothing can be done go rest your brain for 2 years then your recover lol
My scan also showed thinning of the grey matter around the brain too
I love the way im told im stressed out like they know my life by a 8 min Appointment after a 2 hour trip to London and getting lost abd ending up at the tower of london but maybe i went to the correct place in the first place lol
Everyone gets stressed in life even neuros they do not class themselfs as having FND as they in high stress lev jobs so i dismiss that stress is a factor in FND as ive gone down hill over 8 years and im a really laybed back person yeah get day to day stress like work roads on the road the cat wont stop asking for dreamies the day to day stuff and the pain and stuff FND causes but stress does not fill my life im happy i laught in enjoy what i can of life
I say just enjoy things for what are on a daily basis as we not going to beat Doctors as they got there mind set on FND and it does not really cost much money as there is no care pathway so its win win
This post my seem harsh i Apologize to anyone this may cause Offense too im just saying how its been for me.
Tabe
Thank you for the post. I don't see any offense. Sounds like you've had to get this off your chest.I'm trying to battle as I've done with Tinnitus, but they've left me with so many questions.
I don't want to tar them with the same brush, but I made complaint about my neurologist. I turned up for an appointment that had been cancelled and I hadn't been informed. I wasn't bothered about the appointment cancellation, but how he treated the nurse who tried to apologies.
All the best and thank you again.
Hi Dave, If you go back to the post of Numma100, you will find video clips explaining the changes in the brainnetwork caused by FND. The whole website of Julie Hersberg is enlightening, but makes it somewhat frustrating, when such integrated therapies are not available on the NHS, and maybe not in the UK. Some regional neuro centres have specialaist clinics for MS,ataxia, PD .. but ignore FND. Any pointers to such MD therapy, please post...does any one know if centres such as the Rosa Burden, work on the multi disciplinary basis Julie outlines in other videos?.
Hi Dave
Its the dx that makes it worse, I heard recently that FND is just a "descriptive word" given to describe to that the nervous system is sending pain when it shouldn't. Its perceiving danger that doesn't exist and acting on it like the danger is real and thus sounding the alarm systems.
Yet the labelling in itself is causing more symptoms, stress and anxiety and thus a vicious circle. EEG's aren't routine for FND, we never got offered one but I did my research and I could see why, maybe if my son was presenting symptoms, spasms at that time but it was always after the appts.
I see so many posts saying that the mention of FND is scary, its the unknown and there are so many life stories that we read but we are all unique and our brains will respond differently.
I believe if given the right primary care and referrals a lot of people would not be experiencing symptoms years later.
We are given links to "info" sites and left to go it alone or given inappropriate meds that may cause a further layer of symptoms. Yet, if we are given the "tools" to take back control initially (instead of waiting for endless appts which in turn gives us time to catastrophize) and effectively re-train our brains that would surely be better.
fMRI is an emerging field in FN(C)D and may prove useful but it's very expensive to do and there haven't been many studies although I found this one interesting (I think it's more recent than the one in the science direct link but am too tired to check) doi.org/10.1016/j.nicl.2021...
Unfortunately your experiences of receiving this diagnosis are not uncommon. Very recently a contact of mine (who has a rare condition) was diagnosed with FND during a very short appointment with a neurologist and, when she questioned the diagnosis the neurologist said that her questioning it proved he was right. Erm, nope, there is nothing in the literature that proves that and she was flabbergasted too. Especially when she asked the consultant for more information about FND and was told to 'google it'.
I hope you can get the answers you need and the treatment you deserve very soon. Remember they have to tell you what 'ruling in' signs they've used to make the diagnosis and if they can't then I'd ask for a second opinion.
Thank you for standing up for the nurse - consultants who treat nurses badly need to walk the plank, toot sweet. Hats off to you for that 
I have only got to section 8 and to be honest a lot of it went over my head and its a long read (esp on a phone, breaks suggested):
13. Conclusions
Neuroimaging research in FND has steadily matured alongside substantial progress made in the diagnosis and treatment of this population.
This article provides readers with an overview of the state of neuroimaging research in FND, emphasizing conceptual and methodological considerations.
A research agenda to promote high impact neuroimaging-focused research questions is also outlined. Given complexity inherent to the pathophysiology of FND, there is an urgent need for large-scale collaborations to more definitely answer key mechanistic questions regarding FND.
Advancing the pathophysiology of FND, in part through multimodal neuroimaging approaches, has important ramifications not only for FND but also for a more holistic conceptualization of mental and physical health more broadly.
210272 - That must have been what they used in Australia, think I heard it on the video I posted from the neurosymptoms.org
Lady4 it did happen in Australia but it is not a valid way to diagnose FN(C)D. If there's a video that says it is, I'd really appreciate the link to it. Thankfully the GP of the person concerned was having none of it and got her the second opinion she needed so that she got accurately diagnosed. Many people with rare conditions get fobbed off with a psychiatric diagnosis initially and it can make their diagnostic odysseys much more traumatic than they need to be.
Well I am not 100% sure if it was the same type of imaging but pretty they mentioned hypo activity, I posted it on a thread here but will double check.
It was a functional MRI scan. The Neuro psych said that when you put someone in a scanner they can see that emotional network light up. I guess that is only when the symptoms are happening though.
She also said that FND is a mimic neurological disorder and it can mimic symptoms like MS and Epilepsy for example.
Watch the video, its at the bottom of the page on the neurosymptoms.org
Thanks I think Neuroimaging is useful for some patients and will help increase knowledge about FND and other central brain conditions (eg central vestibular conditions) but it doesn't tell us everything about what's going on in our bodies at any given time, such as hormone fluctuations and fluctuations due to external factors such as changes in barometric pressure etc etc.
Would the sensory profiline help with responses to barometric pressure.
Also on a another note, still reading that acticle you posted but do you have access to this research 😉:
"Special functional brain scans (fMRI) used in research, which show patterns of brain activity, are starting to provide early evidence for how the brain goes wrong in FND. fMRI scans show changes in patients with FND which look different from healthy patients without these symptoms as well as being different from healthy people pretending to have these symptoms. Functional imaging is still just a research tool and is not developed enough to be used in diagnosing individual cases of FND. Scans support what patients and researchers already know – these are genuine disorders in which there is a change in brain functioning, which is out of the control of the person with FND." rarediseases.org/rare-disea...
Very interesting article from what I've read briefly. Many thanks. I will certainly return to it.
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