Functional Neurological Disorder (FND) - articles, social media and discussion

https://twitter.com/user/status/1807057489260634381


Here is an important point: if you come on MY posts to argue with me, be prepared to defend your position. If you can't defend your position, don't comment. This will be my last post reinstating the obvious for those who still have doubts or are unclear, unsure or confused:
✔️ POTS is not a psychiatric disorder
✔️ POTS is not functional or "functional neurologic disorder."
✔️ Stress is a major trigger and must be reduced; psychiatric comorbidities must be treated IF/WHEN present
POTS is a neurologic and cardiovascular disorder with multiple symptoms and comorbidities: FND is not a common comorbidity.

Wishing everyone a great day and an exciting #DysConf2024!

 

Crivens! Whut aboot us, ye daftie!

 

Merged thread

My GP told me to get moving after I was paralysed ('FND')

https://www.bbc.co.uk/news/articles/ckgxd88lgy4o

"A man who was left unable to walk or talk by a neurological disorder has called for greater understanding of his condition after he was told to "get moving" by a GP.

Liam Virgo, 22, was 13 when he was diagnosed with functional neurological disorder (FND), which affects how the brain sends and receives information to and from the body.

He was left bedbound for three years by the condition, but is now making a slow recovery and learning to walk again."

(I wonder...)

 

FND really is following in CFS footsteps isn’t it?
Where the researchers and clinicians who came up with it spread stigma far and wide limiting seeds on the breeze.

Then the FND researchers, well inventors or rather re-cyclers if we’re quite honest, publicly complain about this stigma, blamed on some unknown party, this that means other doctors are mean to their (FND) patients, but only we’re told because of these doctors not understanding the construct that our FND researchers have invented.

All problems, and poor patient outcomes, the fault of everyday doctors.
In ignorance of what?
The specifics around FND?
This ruins everything.
They ruin everything.

Except there is nothing to know. There are no specifics . Just knowing that there is no there there. The stigma is built in. There’s no escape. The FND.

I’m so glad many patients recover well from this ordeal. But I really fear for those who don’t. How many people are killed by doctors who saddle them with a ‘no further investigation diagnosis?’


We know what happens to people with ME which is also sometimes greedily devoured by FND researchers. It’s not good. Premature death is going around.

 

I have a friend who was diagnosed with FND which ended up being MS. They said discussing the whole thing with someone skeptical of the concept made them feel validated of their aversion to that label they were given. They also asked if there are any writings critical of FND I could send them. Anyone know something I could send?

 

Tuller has writen a lot about it:

https://www.google.com/search?q=sit...wQYASBf&hl=nb&sourceid=chrome-mobile&ie=UTF-8

 

https://jnnp.bmj.com/content/83/3/248

 

Merged thread

'I went into hospital for four days and came out two years later (FND)

Megan Dixon was 13 years old when she started feeling unwell.

By 16, her health had deteriorated to such an extent that she was taken to hospital after losing the ability to speak. Doctors believed she may have had a stroke.

She had only been due to remain there for four days for tests, but came out two years later completely paralysed. Unable to walk, talk or open her eyes, she was told she would never move again.

Megan was diagnosed with Functional Neurological Disorder (FND), which meant there was a problem with how her brain received and sent information to the rest of the body.

https://www.bbc.co.uk/news/articles/cx2x13k170do

 

Contractions in the knees? Is that an ME/CFS symptom?


“
She said: "I can move everything now. Obviously I can talk, I can see. I can't walk and I'm never going to be able to walk again, but that's because I've got contractions in my knees.

"I need surgery in order to bend them because my legs are stuck straight. It's very painful, but I'm waiting on surgery, and it means I'm never going to be able to walk again.”

 

To be honest it sounds very m.e type but no post-exertional malaise mentioned so unclear. Everything else I’ve heard of in severe me. I have contractures in my ankles and know someome else with LC/ME in their knees and we would tbf be devastwd if surviving the horror of severe ME amd Hanging on through the dark ages of scorn and neglect to be given some form of treatment for m.e but never be able to walk again.regarding contractures Afaiu well known risk & management is t always simple. Jessica Taylor ,a famous severe case, with similar age to this girl , deterioration into zero function , had to have her arms splinted and required surgery on improving and there was girl decades ago featured on the Esther rantzen m.e tv program who had a badly contractured hand drs would not believe she could not move. She posted years later that was a lot better on Facebook but I was sad to see her hand still twisted

 

To be fair, especially if you only experience delayed, it’s probably not uncommon to not really realise PEM is a thing. Especially if you’re in rolling PEM.

 

No, but I guess anyone could get contractures from very prolonged immobility?

 

for me the issues are not just arising from immobility, but I think hyper Tone, spasticity, the type of issues seen in neurological conditions. I get a lot of muscle issues all over, including facial grimaces and the bent arms, claw hands, we see when people have neuro injury but it's my ankle feet that are worst as I can hardly ever move my left foot. I can't say this conclusively as I have no medical care and have had little time with neurologists. The nhs gp etc were keen to put it down to immobility but I don't think so & I have had nhs physiotherapists diagnose hypertonic muscles. https://www.wsh.nhs.uk/CMS-Document...agement-advice-positioning-for-spasticity.pdf

 

I am not aware that spasticity has ever been recorded in the context of ME/CFS. It implies a structural upper motor neuron problem and that has not been reported in ME/CFS. Contractures will occur with prolonged postures - chiefly plantar flexion of feet and flexion of knees. Spasticity tends to force knees into extension.

 

I remember reading (in an Action for ME magazine, I think) about 35-40 years ago an account by a man of his wife with ME whose hands kept contracting so badly that she had to have her fingers broken. I may be misremembering that, and of course she may have been misdiagnosed with ME or the hands issue may have been separate. I don't think I've heard of a similar case since.

 

That happens with lupus but I don't think one can assume this was ME/CFS.

 

It probably wouldn’t be recorded as few with severe ME have specialist care, or research, GPs never view or interpret m.e medical terms. In my view my own experience of limb and distressing muscle tightness & tensions , especially after the limb js used or stretched is more than immobility eg neck twisting over and facials grimaces, lying limbs all contorted etc, which I used to do in my crashes before becoming Bedbound and immobile. It fits with very severe ME neurological issues eg loss of swallowing , & m.e classed as neurological disturbance, .jessica Taylor

 

I think that is difficult to argue. There are maybe 10,000 people with severe ME/CFS in the UK. At least a proportion of them get to be seen by physicians. Spasticity that contributes to disability is a straightforward thing to pick up that we all learn to do as medical students. Has this really been missed in every case?

Nobody has actually documented 'neurological issues' in severe ME/CFS as far as I know. If they occur then someone should go out and document them. I would be very happy to do neurological examinations on anyone who thought they might have neurological signs because if they did it would totally change the research questions we are asking. At least in the past there have been competent physicians, including neurologists like Saul Berkovitz assessing people with ME/CFS. Why is there no documentation at all of neurological deficits?

 

I think the severe figures , if 25%, are way more than 10 000. How do you derive those figures? It seems to be based on the lowest estimate of severe ME 10% of the lowest estimate of ME/CFS 100 000? However it’s going to be primarily in the very severe/ bordering on extreme cases ,and even then , not all just some. It’s not going to conform to usual rules. Eg my arms will be bent up, because of a driving force all day but at night on my side they go straight all night which has presumably prevented contractures