Functional Neurological Disorder (FND) is a multi network brain disorder

[@anitagrainger429]

Thank you so much for sharing this,since being diagnosed a neurologist told me I manifested all my symptoms I felt insulted and very upset who on earth would subconsciously will symptoms on themselves to live life in a state of high Anxiety, no sleep, muscle spasms non-epileptic seizures and limb weakness 😢

[@lovefromrosecottage]

I'm trying to come to terms with the lack of support given since I was diagnosed and my doctors are not very helpful, so I would like to thank you for sharing this video.

[@theoneandonlypinkypinky8245]

What Carolyn said. thank you but I want links to the research so I can give it to my doctor. I live in the US.

[@CarolynS192]

Thank you so much for publishing this. I would appreciate references to the original research.

[@tomplender1378]

Here is the FND Action medical info sheet, it has citations to many key research papers - www.fndaction.org.uk/wp-content/uploads/2023/08/26.08.2023-Information-guideance-sheet-for-medical-professionals.pdf

[@mermaidshewrote]

Same 😄

[@karunikahaulkhory5120]

I asked the same! Glad to see that I am not the only one.

[@Divin_Tenebrae]

Yes, please share with us from what research did you draw to. It will make it more legitimate. Thank you prety much.

[@thebravemuriel]

I was diagnosed with functional neurological disorder on June 2 2023 andi think more doctors need to know about this research hopefully one day it will lead to a CURE

[@kerrymaughan11]

Ive been diagnosed with FND but also have white matter hyperintensities on my MRI, 3 are small dots and 1 is about the size of a large coin, the MRI also found significant signal change. If FND is supposed to describe a condition with no damage to the hardware then why is my hardware damaged. Misdiagnosis? Or just a lable until the doctors figure it out?

[@Fattyrbuckle64]

Hi I have 2 white matter lesions and I tried to point out about these as there is a paper done by the bma about the importance of white matter foci lesions. So I asked a neurologist about that and this was his reply in front of my son. Some neurologist believe that and some don't. That's the attitude from the Brighton neurologist I find it pass the buck to someone else sort of attitude. That's not trying to find an answer at all what the hell are they getting paid for, I even paid for my own mri. Hope you have better treatment where u live and if you do can you let me know so I can move there as they don't have anyone apparently who does FND patients in west sussex. Tc

[@kerrymaughan11]

@Fattyrbuckle64 Hi, thanks for replying, I certainly will, I'm not someone who will easily go away, some of my symptoms are not explained by FND and as such I found it really confusing. I'm awaiting a second opinion by another trust, about 1 week ago my genetic results come back, I had to push them to test - Surprisinglyn I do actually have a genetic deletion aswell 4q26q27. My daughter also has this and my other children are also getting tested. So that just complicates things a bit more but hopefully puts me in the right direction for an actual answer rather than a floating disgnosis, from what I have been told its possible that our symptoms may not be FND but just a lable to keep us floating until new evidence comes to light, It may be wise to push your GP for a genetic referal. Leave no stone unturned, at the end of the day it's us that have to live with the symptoms.

[@karunikahaulkhory5120]

Is it possible to share the medical evidence from research that explains exactly how the mechanism between the brain anomalies, you mention, and the muscles that go into paralysis works please? In the ion channelopathy, periodic paralysis, the research is clear and the mechanism by which the paralysis episodes happen is clear. I am very interested in seeing similar research and evidence in FND. Where may i find it please? Thank you in advance

[@theoneandonlypinkypinky8245]

what is the treatment?

[@Ilovemyselfsomuch7]

I was diagnosed with fnd July 10th 2024 and just a few months later I’m walking with a walker now and without a walker in the house

[@ArgentoFan]

I've had fnd since 2017. I often cry when I'm having episodes because of the sheer frustration of knowing I can't get any help.

[@karunikahaulkhory5120]

Were you assessed for primary periodic paralysis? It is an ion channelopathy that causes episodes of paralysis.

[@ArgentoFan]

​@@karunikahaulkhory5120 no I don't think they did that test.

[@stellaancimer8505]

What kind of resarch? Thanks

[@tomplender1378]

Here is the FND Action medical info sheet, it has citations to many key research papers - www.fndaction.org.uk/wp-content/uploads/2023/08/26.08.2023-Information-guideance-sheet-for-medical-professionals.pdf

[@teresaross7991]

I really wish this would spread to the United States

[@thebravemuriel]

I agree i have FND too

[@John-y9b5b]

The consultants and doctors I have seen have been a disgrace they are not interested they have failed me big time

[@Truerealism747]

Highly linked to autism

[@johnhalbe6530]

Get so high you think you have nothing wrong