Understanding functional neurological disorders

Exactly seven weeks ago I was finally diagnosed with drop attacks and a functional gait disorder. This post is about understanding the condition!

Drop attacks and gait disorders are functional neurological symptoms, which means there is a problem with the way my brain is sending messages to my body. This is not due to an underlying neurological disease (causing permanent physiological damage) but as a result of a problem with the functioning of the nervous system. In my case—as far as I understand it from the doctor’s explanation—I had a virus (or more likely, a combination of several viral attacks including glandular fever) that caused reversible and temporary damage to the nervous system. These problems are therefore due to predisposing and precipitating biological factors (rather than social or psychological symptoms such as in some cases). This then triggered the functional neurological symptoms. When my immune system eventually fought off the virus, the nervous system didn’t begin to start working correctly again as it should have done, and instead it continued to malfunction, resulting in repeated and frequent drop attacks, and leading to the secondary problem of a functional gait disorder.

A quick summary of my condition and symptoms:

  • (Primary problem) Drop Attacks: sudden and random falls to the ground without loss of consciousness, experienced when walking or standing and without warning, and with rapid recovery. Sometimes in combination with dissociative attacks
  • (Secondary problem) Functional Gait Disorder: a combination of hyperkinetic gait, sudden knee buckling and astasia

One of the main obstacles in reaching this diagnosis seems to have been the result of a heart monitor detecting unremarkable heart arrhythmias during my first stay in hospital. I was eventually diagnosed when I went to see a neurologist consultant who specialises in balance conditions, and she was able to recognise the specific balance and movement problems as characteristic of a functional gait disorder. She even took videos of me to show her colleagues what these problems looked like in an actual patient. She also recommended that I use a walking stick in the meantime, which has been hugely beneficial in allowing me to regain independence and mobility.

Functional neurological symptoms can be difficult to understand and explain. The best and easiest-to-understand explanation I have seen (from here) describes how:

If you were a computer it’s like having a software problem rather than a hardware problem. If you have a software bug on your computer, it might keep crashing or work really slowly. You wouldn’t solve that problem by opening up the computer and looking at the components. You wouldn’t see anything if you did an x-ray of that computer. You’d have to solve it by reprogramming the computer, working out which programs were causing the problem.

The term ‘functional’ is used in the broadest sense to mean a change in the function (of the nervous system) rather than the structure (such an in a stroke or tumour).

Since my diagnosis I’ve been having intensive physiotherapy at a specialist neuro-physio clinic in Oxfordshire. This involves attacking the neurological symptoms with similar techniques and exercises used to approach other conditions, where there has been permanent damage caused by a brain injury or a neurodegenerative disease. It’s physically tiring and very demanding, but I am definitely starting to see gradual improvements. It’s great to be finally taking positive steps to tackle the problem, rather than still be waiting around for a diagnosis! As my physiotherapist is a specialist in dealing with neurological conditions, she is also able to explain the ways in which the pathways in the brain for normal movement and balance have been disrupted, and how experiencing normal balance reactions is a step towards laying down new pathways.

Because functional neurological disorders are not fully understood, and because of the rarity of this condition occurring in a young person, it’s not known how long it will take for me to regain normal function. However, we have high hopes of me being able to return to ‘almost normal functioning’ by the new academic year in a couple of months time! The next phase of physio involves experiencing falls in the ‘controlled’ environment of a swimming pool…

[Much of this information comes from http://www.neurosymptoms.org/#. Check it out if you’re interested in more info on rare and often misunderstood functional neurological disorders!]

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