Feel a bit of a rant coming on. Yep who are we to the medical profession. Nothing if you have non-epileptic seizures. We’re told it’s not in our heads and then told we are dissociating. From what? Oh yeah some childhood drama that we haven’t dealt with properly. Well I can think of the most horrible things from my childhood and not go into a seizure. Why can’t they bloody well do more research into that aspect of FND rather than just concentrating on areas that they have more of an inkling about. We’re basically just told to go away and perhaps some magical thing will happen and we won’t fall over at random and lose all dignity if it is outside the house. Perhaps we’re just dissociating from the same old bollocks they just keep telling us.
Rant over.
Cheers
Lou
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Holy shit you rant away - you’ve more than earned that right. Here in the UK our NHS system is seen as a Holy Cow that we are not allowed to criticise. Well I say the creaking wheel gets the oil. So I’m not going to bow down to egos and lack of knowledge. Listen to the patient- you might just learn something!
I’m a thran Irish woman and try not to let the seizures keep me house bound. I think the biggest stress is on my family when I say I am going into town on my own. I’m not going to let FND define me. I’m on a bucket load of meds but have just recently got myself a vaping CBD gadget. It’s legal and does take the edge of things. So that’s some help.
Hope they help. I’ve just decided to max out on the liquid - 600 vapour from the 300 I’m currently using. When my non FND husband has a little go he does say it calms him. Bloody need it with a 16 year old daughter who has just turned 17 and is deeply in love. This house is one big rollercoaster of emotions 😂
Yeah it would be great. But then our Disorder is so rare that we don’t get priority because it affects only a few of the population. And you don’t get your name in lights in The Lancet for a piddling little set of people whom you really don’t know what is wrong with them. When are they going to stop saying we sit where psychiatry meets neurology. I may need a shrink to deal with issues but thats got sod all to do with FND except my frustration at always having to explain it to medical professionals over and over again. I’m just going to give them an FND leaflet, tell them to go away and read it and then we can have an informed adult discussion. But then again it’s more likely that Hell will freeze over before we get to the Promised Land of acknowledgment and respect and being listened to. Cheers Lou
Hey, hey, cognitive behavioral therapy encourages us to not think that the future will be negative. FND costs governments money, so it would be worth it for a nation's or a populous place's government to invest in FND research; the research results could save the government money.
I agree about the actual reduction if the Government funded research. But we are so small a community but we do have loud voices and really intelligent brains so pushing with FNDHOPE is a good way to start the long battle. Cheers Lou
Actually, Louyse, FND is the second largest cause for people presenting at a neurologist!
But then again, in Ireland there is NO neurologist who will see you (well, see me) or treat (me) for FND. I had to go to London! (I may have mentioned this in a previous note)
Hi. This is something that I’ve taken up with the Board of FND HOPE UK. While our specialist Consultant (who puts a lot of time for free) he says that 1/3 of his patients have FND. But that is the clinical prevalence. The Consultant said that if you took the city of Birmingham (UK) then 60 - 90 people would have it. Hey my maths is not great but given that Birmingham has a population of 1 million does that suggest rarity at a population prevalence of 0.006 to 0.009? I’m still calling it rare until some decent research shows otherwise. Cheers Lou
Go for it 7th! Let it rip. However, not all doctors have a "what's in it for me?" undertone. Perhaps this is more so in Ireland and in the UK (there are always exceptions, I have met a couple, to my cost - FND being a prime example!) as we have a socially-supported medical system, although this is being eroded.
I have met and been treated with respect, intelligence (not always present), and skill by a number of very fine, capable and caring doctors and surgeons. As a 12 year survivor of neck cancer (2 weeks to live before my surgery in 2006) I have reason to be grateful to the surgeon whose skill in removing the tumorous stuff in my neck gave me an extension of my life.
My diabetes is well controlled, as is my bi-polar illness. (If you want to know about illness and job opportunities, tell a future or present employer that you are bipolar and see what happens...... mostly 'goodbye', or a sudden interest in the quality of your work - and subsequent disciplinary proceedings leading to 'goodbye'.)
So rant on. Your brother was bloody unlucky. The medics who 'treated' him were not a great example to their profession (I shall say no more about this.)
Do not give up. Get better in spite of the medical 'profession'.
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