Sorry but ranting approaching at a very fast pace. GPS, doctors at hospitals, Consultants, Neurologists, paramedics- DO YOUR HOMEWORK. We ARE NOT converting past trauma into seizures. We do not belong butted up against psychiatry. If you don’t know say so. Stop fobbing us off with some lame whisper about past trauma. Yes there’s trauma but it’s FND diagnosis first and trauma caused by the medical profession thinking we are faking seizures for attention. Yep that’s right, we all gave up well paying jobs, our independence, our health, our friends just so we can lie around on the floor for attention. And they think we’re mad.
Time to press these experts on their seizures research : how many of FNDers have seizures, how many have preceding trauma and/or mental health problems. If we are to fight this on-going war of ignorance and stigma we need more arsenal. Rant over ✊
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True true louyse, I must say I can relate a little bit to your post. Unfortunately your post isn’t the first time I have read and probably won’t be the last time about individuals being fobbed off on here from there doctors, neonatologists etc. I must say I think I’m got a decent neurologist consultant, who does listen to me etc, even though the last time I saw him, he reckons that my attacks/seizures are non epileptic attacks not epileptic of any kind- I must say I don’t 100% agree with ( I know I’m not a doctor) since I have last seen him I have developed new Symptoms, which I have updated his secondary so it’s been passed on to him before my next appointment. I also had a EEG test on the 22nd Sep which when they used/ put the flashing lights on me it caused my whole left side to jerk for a few seconds - is this a normal reaction? I couldn’t even look at the flashing lights either, I kepted closing my eyes - It was good I suppose that the EEG was recorded.
One thing I've said to a doctor in the past - he asked for it honestly. I pointed out that he was not working at a top research hospital and there was a reason for that - he wasn't intelligent enough, his career was not going in a good direction. I'd rather trust a doctor with an actual doctorate. I also pointed out that it was bordering on the deluded to think that he knew better than doctors who had done the research, and based their opinions on research rather than well worn prejudice. I pointed out that fMRI's had been around for a long while now and had blown his "opinion" out of the water. I pointed him in the direction of Prof Edwards and Dr Jon Stone's research.
I'm not popular and I don't care. I'd rather take the opinion of someone who knows what they are about because they have done the research. Honestly it's not the first time I've had to say I'll listen to the people with the brains, who are carrying out research and know what's what because they see people with their own eyes. Not the people who read other's research and delude themselves into thinking that they are consequently more intelligent than all of them put together.
I've seen multiple 'specialists' who just make up facts and figures from thin air but when questioned about where they got that info they get very defensive. The most recent neuro I saw did this and when I questioned her 'facts' and pointed out that what she was saying completely contradicted the FND specialist I'd seen previously. She did not like it one bit and actually became really nasty, bordering on downright unprofessional. Honestly if they dont know the answer I would prefer they admit to it rather than make up whatever they think sounds plausible because not only is it frustrating, it could be detrimental to someone who only has information from that one incorrect source.
I loathe taking my 15 year old son . It has been like this . Started when he was 10. Just out of the blue had about 3 seizures but then stopped. Back in March 2017 and now he can not do a darn thing. It's like it h starts exhorting himself with a normal day he really starts feeling bad, shot his wonder teachers at school said they can tell when Caleb was attending school. Always everyday he would struggle out the door and even before getting on the bus (special ed) he would drop with a seizures. Anyway to go school sick feeling, teachers could call tell , and by 4th period he said Mrs. Moses i myself c
Know because I can already tell he is not feeling good when he first comes into my class. And I am his 1st period teacher, him weak looking , really flushed face,headache, and by the time he comes back to me at 4th period he looks willed out completely. He has seizures at school because his body is exhausted. So his awesome school felt he really needed to be homebound. They are such wonderful people at his school. It's a school for students who have lost credit due to health conditions or problems streaming from abuse, or bad environments at home. Kids with cancer or disease. More or less have to live their lives differently compared to your average person, who gets up in the morning, showers,eats,out the door,take kids to school,go to work. Well.we can not do that. We HAVE TO LIVE OUR LIVES DIFFERENTLY BECAUSE OF CHRONIC ILLNESS AND DISEASE. And I wish these idiots doctors would get this. I mean don't they understand we want a normal life of our kids want a normal life just like them. I feel they do more harm than good. The NF D is what affects is mentally.I really feel it is a form of discrimination . Maybe the more we report this to higher up or to the medical boards and they start seeing the stigma and see discrimination, they will hold these hurtful mean people who say they will do no harm accountable. Weather it be psyical or mental. When Caleb was started having them I had this pediatric Neuro tell my sarcastically on mom when he has one, and your in the next room with your family just tell him "Caleb when you can stop having your fit, and your done,just come in where we are and you can join us when your done, right in front of my son who knew nothing about why he felt and and was having 6/7 seizures a day. And then the evil man also told nursing staff they were fake and then they discriminated against us like we had no value. That tore my heart into. The only way we can start holding them accountable is report to the medical board and report to the chief of the hospital.be aware and write down staff anyone who is mentally abusive, discriminating and then tell them you want to know who the chief of the hospital is, then him your experience with your written divination and tell him your notifying the medical board of mental abuse and discrimination. So these doctors can start treating us humanly. What do you think guys. Yes or no or any welcome ideas or struggles we can give advice to you on. Hugs to all my NFD suffers. Love y'all . So let's stand up and rise to these doctors and report them for what they need to be reported on.🌞🌞🌞🌞🌞🌞🌞
That’s so awful. I now take everything to a formal level. Their careers are in their own hands when they choose to assume not only are we feigning but we are also stupid. That’s where the stupidity lies - with them not us. Cheers Lou
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Efforts underway...
Anyone had experience with getting care for FND in prison (UK)?
Is it fnd or am I going mad
