FND – a description not a diagnosis

[BuntyP]

I'm looking at FND as I would at ME/chronic fatigue syndrome as a description of symptoms instead of a diagnosis. The equivalent would be asking a GP how many patients they'd seen with a rash last week. That would tell you how many people they'd seen with a rash but not what had caused the rash. With a rash, the GP can also generally make a diagnosis, whether it is something terribly serious like meningitis or minor like an allergy to nickel in a necklace. Likewise, FND symptoms may be quite minor and transient or serious enough to be life-threatening and so far it seems to be a secret what causes them. I think it is likely that in some people it is viral, in others bacterial, in others scarring after physical trauma or infection. It is well known that long-term stress causes a decrease in the immune system increasing the likelihood of infection and a decrease in the speed of recovery which would explain why people can get this after difficult life events. Given the complexity of the nervous system, symptoms could result from inflammation within the neurone, problems with neurotransmitters at each end or with the insulation. Each of these may cause similar symptoms but will be at the molecular level so difficult to measure. Hopefully, with increased research and better tools for testing at least some patients will get some answers and subsequently some effective treatment. Good luck to everyone, I am slowly recovering and can walk again.

[Katherinedeane]

completely agree - FND is a syndrome ie a bundle of different illnesses with different causes but similar end symptoms. I hope more research will start to give us clues as to cause. What I worry about is the clinical world grabbing at the first cause and saying that is it for all of us. Its very obvious to anyone in the community that there are different sorts of FND - I hope this is kept in mind as the research starts to clarify some of it

[5996dawn]

I believe you, made a valid point.

[Lima-B]

One of the best posts so far. Well done!

Some “of us” describe it as a nightmare and I don’t really feel like that, being paralysed from the neck down for a short while but “knowing” that somehow I’d be back to normal as soon as it happened. The worst bit - for me, at least - was NOT KNOWING why that had happened! I was puzzled to myself, wanted explanations from the doctors at the hospital and many times I thought it was me and that made me doubt about my mental health. Thinking I was going crazy was truly scaring.

[ukmsmi4]

Totally agree with regard to FND and CFS. They are both waste basket diagnoses that basically mean you have a collection of symptoms and we don't know what is really wrong with you, and more to the point can't be bothered to look any further to find out. In essence they represent a misdiagnosis.

However, totally disagree with regards to ME. I have had ME for nearly 30 years and can personally tell you it very much is a real condition in it's own right that the NHS simply fail to recognise. I have done a lot of research and there are over 9,000 pieces of peer reviewed scientific research that prove ME is very much a biomedical physical condition. Sadly for political reasons the establishment and the medical profession choose to ignore them. It's a long and depressing history that needs researching to understand. There are tests to prove ME, not definitive ones, but a collection of tests that when done together will point strongly to the condition.

If you want to know more you just need to look up the work of the Hummingbird Foundation, Ramsay defined Myalgic Encephalomyelitis and International Concensus Criteria (ICC) ME.

Part of the deception and attempt to bury the truth about ME involved conflating the genuine condition ME with the wastebasket diagnosis of CFS which doesn't even exist as a condition. It was in fact a concept invented in the late 1980's as a means of studying a multitude of fatiguing conditions.

The deception and denial of ME has lasted for decades but slowly the tide is turning.

PS. I have diagnoses of ME, Fibromyalgia, Restless Leg Syndrome and most recently a diagnosis I personally deny even exists - FND.