Brain disorder leaves ‘legacy of disability’

Thursday 6th June 2019

Researchers at the University of Edinburgh have confirmed a difficult-to-diagnose hidden brain condition has long-term, sometimes disabling, physical effects.

Four out of five people with FND, which causes limb weakness or paralysis, were found to have lasting physical difficulties 14 years on from the last study.

Professor Jon Stone of the university’s Centre for Clinical Brain Sciences said perceptions of FND have changed dramatically over the past 20 years but doctors are still likely to dismiss patients as ‘imagining’ or ‘putting on’ the condition.

He said: “Thankfully with better research and treatment those attitudes are changing. This study shows the importance of neurologists staying involved with the long-term management of patients to guide treatment and detect additional neurological conditions, which can rarely occur years after the start of FND.”

It’s hoped the study, which tracked the outcomes of more than 100 patients – the largest of its kind – will help doctors provide realistic prognoses in future and encourage more work on treatment.

Initial studies 14 years ago found FND is as common and disabling as better-known conditions such as multiple sclerosis. It has, however, suffered from stigma because it cannot be seen on conventional brain scans.

Doctors often describe it as a ‘software’ problem of the brain rather than a ‘hardware’ one – a condition related to how the brain processes information rather than a physical defect in its structure.

For the follow-up study, patients filled in questionnaires to assess their physical and psychiatric symptoms, quality of life and perception of their illness.

Their answers revealed that levels of physical disability and distress remained high, even after 14 years.

Doctors can sometimes be reluctant to give a diagnosis of FND for fear of making a mistake, the researchers say. But the team found mistakes are rare and this should not prevent them making a diagnosis using clinical signs, even if tests are normal.

The study was carried out by the universities of Edinburgh and Groningen in the Netherlands and is published in the journal Brain.