Research

[SKADIARTEMISISIA]

I just read this comment from someone with FND. All this is new to me. But maybe it's of some use, so thought I'd share.-

I recommend you to watch these two videos to learn about what research has said recently about FND:

youtube.com/watch?v=aIqrH2L...(Not working as expected?)

and

youtube.com/watch?v=vtS7faS...(Not working as expected?)

(this video exists out of 3 parts, I recommend listening to all of them)

What I personally find very interesting is that there is already proof that FND is not a conversion, and it is not maligning - there are 7 separate neural pathways that are distorted and malfunctioning in people with FND.

However, neurologists aren't explaining this to their patients, and they still focus on our mental health.

Next to that, AI can diagnose FND based on MRI images with 60 to 70% accuracy(I don't remember the exact percentage, it is in the second video). In other words, once we can actually recognize an abnormality on a MRI, then it can actually be diagnosed by just doing an MRI(which would be wonderful, both for the patients and the doctors).

I wish that in the future they will do more research about the connection between inflammation and FND. Most people with FND have constant inflammation going on(increased C-reactive protein or elevated C3), and in some cases FND responds well to steroids. I also hear from a lot of people with FND that their metabolism(and especially their blood sugar levels) is directly influencing their symptoms severity, so I hope they will focus more on those things in future research.

Besides that, don't lose hope. FND is very managable, and I can tell you, once I read about all the research related to this condition, I learnt much better how to manage FND. Doctors won't tell you, and they will try to blame you for the illness(by basing their explanation on your mental health, instead of clear, scientific research). I got a grip on my seizures and tremors by just researching the condition myself, and make lifestyle adjustments based on what the research says.

[kev60]

hi, I’m 7 years in so far affecting walking, talking and memory. I have disassociative seizures I think that’s what they called them , one minute I would be in conversation then I go blank staring into space but in my head I can see everything. When I come out of it I think I have finished the conversation and my wife has to prompt me but I usually have forgotten what I was saying. You do have to find your own way of dealing with things. Neurologist seem to be in two camps and I have dealt with both one blaming me and saying I need physiological help and the other who recognised FND almost at once who offered neuro-physio with which I learnt to walk again. I find I have to teach the doctors about FND although I do find more and more recognise it so that’s good. Kevin

[Lady4]

Thanks for sharing, will be sure to check them out.

MRI usually come up normal but its the fMRI that can show FMD (FND movement disorder). As far as I am aware they are still only used in research studies.

Shimmyaway just posted links to some helpful videos, the "Tremor" one looked like it had some useful strategies, they maybe a seizure one too.