Discussion in 'Health News and Research unrelated to ME/CFS' started by MEMarge, Mar 19, 2020.
On now, this is covering FND
Drat! Missed it. Anyone manage a synopsis?
There is a detailed synopsis here
It doesn't look promising, seems as usual they are reasoning not being able to find something equals something not existing.
Although 66-year-old Pauline has been left severely disabled by her FND, like in all other cases, there is nothing physically wrong with her body. Instead, the shocking seizures Pauline experiences, and which can take hold without warning, may be linked to psychologically traumatic events in her past.
Well I've watched it, it's every bit as bad as it sounded. It's utterly one sided, these poor people suffering seizures that are ruining their lives are delighted to finally get a diagnosis only to wait 18 months to see an FND specialist who informs them that in most cases the cause is psychological and they do not have much to offer them other than if they are very lucky a week on a physiotherapy trial.
Cue footage of a man struggling to walk unaided, sad music and a voice-over 'the more David focuses on his symptoms the worse they become'.
The only tiny shred of balance was a neurologist at the beginning saying there is still so much we don't understand (yet somehow the FND expert knows exactly what the cause is) and the hospital bean counters (the baddies of the story) who questioned if they could fund an expansion of the physiotherapy service without better evidence it was effective.
I got to about 20 minutes or so in.
The neurologist came across as very earnest and genuine. Having stated clearly they don't know the cause, the focus then narrowed to the psychological and that some people process emotional or psychological trauma that way.
Nothing proven and, of course, unfalsifiable.
The bit I saw, had an older female and a male. Both patients just desperate to get some of their independence and lives back. It would be interesting to see how they feel in a years or 5 years down the line.
I suspect many of the ME patients that attend CFS clinics are equally desperate for help to stay functional, regardless of why they are sick.
Another depressing thing is the FND expert is likely earning £100k to dispense her wisdom, though it probably has a good ROI as once she confirms an FND diagnosis the patients are mostly denied any further costly neurological services.
Now watching Jo Daniels on BBC news talking about mental health during CoVid probs.
ETA: That was the 6pm news.
My young Bengal cat started having seizures. He underwent extensive neurological testing (over £3500's worth) at a specialist veterinary centre with world class equipment. They were pleased to be able to tell me his scans and lumber puncture were all clear, with no signs of neurological damage. The result - he has a diagnosis of idiopathic epilepsy...not FND!
Exact same thing happened to me @Simbindi. After extensive testing the neuro said it idiopathic epilepsy... I asked, oh are you going to be recommending her to see an animal behaviourist now then? He looked at me like I was insane & asked why on earth I would ask that - "because in humans all unexplained symptoms are assumed to be psychosomatic"... he rolled his eyes & said "cough couch well that's because they haven't the courage to admit they don't know".
After another symptoms developed (something on her spine) I happened to consult another neurologist who also specialised in spinal issues.... who just happened to be a published researcher on the newly recognised conditions of FARS Feline Audiogenic Reflex Seizures. Which he promptly investigated & diagnosed.
Just out of curiosity, does standard epilepsy treatment help the cat?
I'm so glad I took out a top of the range insurance policy for him! I have 3 older British Shorthair females, that aren't currently insured (but super healthy). I wrote about my Bengal's experience on the cat thread - the specialist vet centre is incredible, attracting international trainees and specialists (the young vet who cared for Loki was Australian)
I've not put him on the medication because it would require me to dose him every 12 hours and this has to be timed exactly. That's completely impossible for me as I can't even remember to take my own medication daily (at any time of day, much less on the hour). It's not the cost of treatment (that would all be covered on his insurance, including 6 monthly blood testing). Medication is only expected to reduce the amount of seizures by half on average. So I'm just monitoring him and at the moment he only gets a seizure (all lasting less than a minute) about every 6 weeks, which is no more than they would be aiming for if he were on the medication. If things change I would have to reconsider whether to let my daughter take him on.
well I believe so - Levetiracepam all but "cured" it - ie seizures disappeared on treatment.
Just looked that condition up - pretty sure if this was being seen in humans it would be seen as a FND now!
FND symptoms are seen as inconsequential. For example: Exercise can't harm you. That's why I think it can be a dangerous diagnosis for ME patients.
Noises set off seizures for me as do certain patterns of light and shade. Strange music can do it, had a bad attack due to Classic FM playing and experimental modern piece and rap music rhythms set me off too.
I also have sudden movements in response to a loud noise which is an accepted part of paroxysmal dyskinesia.
All these things will now be covered by FND. It feels like a thick layer of black oil oozing out, stifling and suffocating medicine and the poor patients.
I sometimes wonder if they trawl through patient websites, especially websites for conditions like ME, and search and locate descriptions and symptoms they think they can appropriate to add to their ever-growing list.
I have no idea why the powers that be cannot see that this claptrap is just progress in reverse. Maybe they do and just don't care.
I dont know about that, but cats tend to spend alot of time of on their own and come back late. I have a feeling they are going to discos that have strobe lights. Maybe put a curfew on them and ask them who they have been with.
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