Hi to all who get

[Choolosa]

Iv had FND for many years now. It’s been hard as have lost many facilities, socialites etc. But there are great doctors out there who are helping with this disease. I’m hoping it becomes much more widely known about. As even the bbc have reported that in the future 25% of people reporting with a physical symptoms, will have FND. It’s amazing that we hold physical symptoms and when they are actually neuroligical symptoms and I hope we get help by believing what we think to be physical is actually all in our heads. Now being serious rhee is no such thing as FND. I’m a health professional who lost 3 years of my life believing this fake diagnosis, I met many friends on this website who are dying now due to believing that their cardiac problems, their kidney failure, their liver failure was all in the head, I am one. I am in kidney failure but luckily you might ask why I am a health professional and always questioned why my frien’s Blood pressure was abnormally low, my other friend in cardiac anomaly until results showed both wrong. Now 3! Years later I’m in liver failure. The people who made up a diagnosis of FND should be ashamed of themselves. I flew across the world to have scans to rove what I actually did have. I diagnosed myself. It was part of my former career. I might die now but I hope I save one of you. Question results, get scans, do not be satisfied by X-rays, they do not show anything and are the cheapest form of diagnostic testing. If you th Bk something is wrong fight it all the way. This post will be deleted but if just one person gets this then I hope one life can be saved. FND is fake. The fact Jon stone sat on an US website with a glass of red wine in one hand discussing that answer to a question - what should we do if a woman is in labour but deciding for him to answer - ignore it, fir them to question - but what if she really is having a seizure for him to reply - oh I guess you should treat it as a seizure means not bog dies he not know what he is talking about, albeit being a world authority but that a mother and newborn could die due to his intoxicated ‘idea’ I’d what to do in an area he obviously knows nothing about. If you have been diagnosed with FND, firstly question what hit you there. I’m guessing either a major accident, bacterial or viral illness then an injury that let to your neurological symptoms when you should all be looking at actual medical diagnoses - autoimmune diseases which doctors are now looking at as precipitating factors for neurological symtoms beginning. Ask yourself this - before accident or major illness was I ok, did I then start having neurological symtoms then am I being offered as treatment - a psychological mix of tablets and psychology appointments for a physical injury or illness. We must all fight this ridiculousness before that 25% becomes 75% and the world just becomes mentally ill. I guess I really regret falling off my bike as I felt psychologically really healthy before but now the docs are telling me it’s made me mentally ill. Just think about it. Really, and they should be ashamed of themselves. They will be up there lunatics like Freud and others in 100 years time, yes that includes you Jon Stone.

[Hidden]

Agree!!! I wouldn't accept that all tests were coming back normal so kept researching and researching and had to take my ill-health into my own hands and contact Armin Labs in Germany. Sent bloods off to them and the results came back positive for Lyme Disease!!

I have an actual diagnosis that I can treat but dealt with four years of being fobbed off and misdiagnosed as FND with fibromyalgia and also told sure I might even cure myself while reading the site neurosymtoms.org! Can you believe that!

Click on my name C-B-S for my bio.

If the BBC has been told to spin the story that eventually 25% of people will eventually have FND then that will be a lie as the general public are not told that Ireland and England are full of Lyme and an epidemic is on the way as they don't offer the proper sensitive tests for them and treatment is expensive if you have it a long time!!!

Fair play for speaking up. People need to hear both sides!

[Choolosa in reply to Hidden]

Thanks. I thought for a while that I might have Lyme. I asked for testing but was told no. I wanted to die I was so unwell. Symtoms autoimmune and physiological and neurotically but none fake. All proven on testing. I was so fit and healthy, now walking round home sometimes too much. but I had to pay and travel to another country for scans to prove to docs what I had. You cannot fake diagnostic tests. Maybe the machines are also mentally ill! What gets me is the need to talk to a psych person when it’s the medical illness that is more than likely gettimg you down, not that you have a mental illness. Also I was ignored for almost 4 years. It takes a toll. Or take a med, if it doesn’t work it’s orobably because it’s the wrong one or you need to add another! You don’t understand why would the docs not want yo coach this early. I could go back to work, be productive, help others, nope it’s easier to just add you to the disabled will never work again pile when I now know the condition I have is now treatable and early studies are showing it’s reversible. Maybe too late for me but I hope others fight. Sorry bad typing product of illness.

[Hidden in reply to Choolosa]

Yes psychological symptoms are mainly because of the illness not the other way around. Because of the tremors and seizures I had people ask did I suffer from anxiety and It would frustrate me as I knew it wasn't that at all!

I once had my GP check my heart and blood pressure while I was extremely tremulous and my blood pressure was low/normal and heart rate normal. How screwed up is that!!!??!

I was also at one point put on Cymbalta for my chronic pain (diagnosed at the time as possible fibromyalgia). It actually helped the pain BUT made me extremely suicidal. I couldn't handle hearing the kids playing and screaming outside or the dogs barking and would fantasise about murdering them. MURDERING THEM! DISMEMBERING THE HEADS OFF THE DOGS!!! IT WAS INSANE!!

What a nightmare I have been through Sorry if that has scared the crap out of anyone reading this but effects like that can happen to the sanest of people from medications!! At least I have always been an open and honest person and would be verbal about my feelings to my loved ones so they always knew what was going on. If I hadn't, I sure would have been an outrageous front page news story!!

I really implore everyone to not just sit back and accept what you're told. If you're unhappy, go further. Research further. Demand more tests. Find proper answers and not just labels that don't provide proper scientific results.

I truly hope you will improve Choolosa!

[Ronwyn]

Him I agree I hate the term FND, it what they give to people they can’t find anything wrong well I say they havnt

Looked hard enough . I’m the same as you I don’t feel well like there is something realy wrong and have decided to search for someone who will listen. I’m scard that since being given FND as a diagnosis all testing has stopped , last year I had my gallbladder removed after I took it upon myself to find out why I wasn’t getting better also found out I have chronic pancreatitis, 4 years ago had a cholesteatoma removed from my right ear. Just seems like I’m always sick with something yet never getting better. I fear many people sit back and don’t push for second opinions cause straight from to get go of diagnosis doctors inform us it’s in our head and you can get better . Well bullshit to that cause I’m not getting better if anything worse I don’t have many body parts left to remove and for the past few weeks have had pain in my heart area but havnt gone to see anyone cause I don’t want it put down to FND only in my head 😭😭😭😭

[Choolosa in reply to Ronwyn]

I get chest pain too. I have Sjögren’s syndrome. It’s what causes the neurological part but it’s not made up. It actually causes problems talking, typing, walking, etc I have lumps too where my glands get sick. No one is even checking them out 4 years later and they are spreading. Iv found from friends in US If push hard enough and have insurance will get finite testing and some answers. In U.K. joke, lucky to get a band aid. I got paracetamol and it gave me life long gastritis. Thanks. New Zealand doesn’t belive in long term illness. It lasts 12 weeks maximum and if you go to that country with already diagnosed condition you will have all your meds stopped and go on 6 month waiting lists To see specialists. But beware even if you might die without this med, the government doesn’t consider that a reason to give you it. In Australia as in New Zealand stronger pain meds are being stopped. think of a problem, -opioid addiction. Solution, research, who needs these, why, yes people live with life long pain and do need these. But in these countries some clever beurocrat is deciding let’s stop them all together, let’s advertise clever sounding names fir new drugs which are actually just one paracetamol and one ibuprofen mixed together but we will state it is better than the old way. No it is not. An adult should take 2 ibuprofen and 2 paracetamol if pain is bad. It goes by weight of the person. It’s like let’s give the public child doses and by the next generation they won’t know any better, but they will all have FND anyway and be in psych meds so they won’t know any better.

[Hidden in reply to Choolosa]

Absolutely! This generation is plowed with psych meds. They are definitely needed in many cases but are prescribed out way too freely.

I also at times get chest pain too I'm so sick of being sick!!!

Really hoping for the time when my energy levels return, tremors and seizures lay off, chronic pain just fecks right off, brain starts to function normally again and I begin to live at a normal pace.