Jaye Wood

@NjRamsay @jonstoneneuro I have myopic esotropia which causes binocular double vision when trying to focus on different objects. I think at times I have an overlying functional convergence spasm which cata on top of the existing weakness. I also have pppd which is a chronic functional vestibular disodr

@Kitschcreations @jonstoneneuro We're looking at visual loss but also blurred vision and convergence spasm when they co-exist with loss of vision and reduced vision (which could also be defined as blurred vision). Convergence spasm is quite a different problem specifically which we're addressing by itself

📢📢 A plea for help! 📢📢 Myself and @jonstoneneuro are developing a new project on treatments for functional visual loss (visual loss occurring as part of FND). There are currently little to no treatments. As we develop this we're keen to hear from patients affected. 1/3

16 years ago I was bedbound, paralysed & couldn't speak. Today I'm annouhcing that I'll be walking on that stage and speaking on that big red dot 🔴 My goals: highlight #FND to a global auidence & share lessons gained in 9 yrs of working with patients & my research & PhD.

@TomPlender I guess I mean "traditionally organic aetiology". I think research will reveal a more organic cause or perhaps an organic susceptibility

@Kitschcreations There does seem to be underlying neurobiology in FND, recent studies showing grey and white-matter alterations. May be reversible with treatment but it's still organic

If you want to understand medical gaslighting, here’s a perfect example. The deeper question is why does the medical system have nothing sensible in place deal with MUS, other than denial of the limits of medical knowledge & scapegoating the patient?

Quite shocking and saddening. Your whole family is outstanding and inspirational and all thinking people can see that. We loved having Isata and Sheku in Canterbury last year and Isata’s prom was superb. You have a lot of love @royalchoral @CanterburyChora @UoEChoir

@KH118118 @jenbrea 🙄

Those studying/treating Functional Neurological Disorder need to stop it right now because @jenbrea has spoken. #FND doesn’t exist. Shame she has me blocked as her expertise is so important! The thousands suffering with FND need to know what they’ve been misdiagnosed with.

1/A common problem with understanding the aetiology of #FND is the question of ‘illness beliefs’ . Many critics argue that researchers in the field have simply replaced the idea of ‘Freudian psychological trauma’ as the main driver of FND, with irrational illness beliefs instead

@jonstoneneuro @FNDSociety As an FND sufferer with a degree in English Literature this post made me smile so much! Smiling is so medicinal 😊

Juliet: “O @FNDSociety, @FNDSociety wherefore art thou @FNDSociety ?” FND Society: “Verona, 8-11th June 2024” Juliet: “Fab, I’ll get that in the diary now then!”

@ZacharyGrinDPT @FNDAction @ThinkingMindPod Tbh I actually found her advocating for better FND services quite warming - it's the assumption of purely psychosomatic basis which I object to. Also, its mainly dealing with NEAD FND symptoms since epilepsy is her specialism so misses out lots of other FND manifestations.

@Kitschcreations @FNDAction @ThinkingMindPod Ugh I have worked with multiple people who were also recommended this when they were diagnosed with FND. Her books need a “FICTION” disclaimer on them!

We were approached by @ThinkingMindPod to comment on this interview with @Suz_OSullivan. We appreciate Dr O'Sullivan's calls for compassion for #FND patients, but have major criticisms of her work. This is a link to our open statement fndaction.org.uk/fnd-action-res…

@KH118118 Honestly I spent months wasting recovery time calling this an "emperor's new clothes" diagnosis and endlessly researching differential diagnoses. Every new condition I heard of I immediately researched symptoms in case i had it. Huge health anxiety now I look back.

@Kitschcreations I might have been easily drawn into the other side if I hadn't done my own research, and like you, had lots of hmmm moments. All it took was seeing so many people suffering with the same/similar symptoms to realise medicine have had this wrong for so many decades.

Find it fascinating that everyone thanking, liking and sharing David’s tweets 1) don’t have FND and 2) have nothing to do with FND. Imagine being sick and being fixated on something you don’t even suffer from 🤯

@KH118118 They are literally hampering any chances of recovery for people with FND especially when so many of us have the type of personalities which question everything anyway. It's taken me 5 years to realise FND and PPPD are right - 5 years lost partly through this cynicism

@Kitschcreations Without any doubt there'll be ppl suffering alone with FND because they've been manipulated by other communities to not accept it. It's so sad because the most basic explanation is it's an organ in your body not functioning how it should do. An organ that impacts your whole body.

@KH118118 Exactly. Why buy a toaster when you can still insist on sitting by the campfire heating bread? Things move on understanding develops but still some are stuck in the dark ages

Wonder how many people in the #FND community did this person speak to to conclude their diagnosis is "garbage", aka dismissing their suffering. Guessing zero. Wonder how much research this person has read in recent years to see understanding of FND has advanced. Zero again? 🙄

@CllrJulieS Wish you well. Been struggling for definitive diagnosis now since 2018.

When I say 'made a mistake', they ordered the wrong tests, misread the results, misdiagnosed me and prescribed me the wrong medication. Fortunately, it was nothing serious and I spotted the error, but frustrating as I thought we were nearly there. We will get there. Meanwhile 😴

This week I have three separate medical appointments as the year-long journey to discover 'what's wrong with Julie' continues. I thought we were getting somewhere but someone made a mistake so I'm having tests re-done and we'll start over. Feeling peaceful but ready. ❤️

@KirstieMAllsopp It's simply the "we won't get caught" mentality - like people who drink and drive regardless of the huge dangers they know they pose to themselves and others.

The unasked question. Why did Boris & others in No. 10 think it was OK to party? How come they were comfortable doing it when millions weren’t? Could it be because they knew Covid was not as dangerous as they were telling us that it was?

#FND #neuroscience #neuro #Neurology

‘Functional Neurological Disorder is one of the most stigmatised conditions in medicine’. Many still refer to outdated literature, or make meaningless harmful assumptions. The #Voices4FND say #timeforchange. #FND #FNDTwitter #InformTheDoctor