Centre for Clinical Brain Sciences

Brain disorder leaves lasting legacy of disability

June 2019: New research from CCBS has found that 80% of people with Functional Neurological Disorder (FND) still had symptoms in their arms and legs 14 years after initial diagnosis.

Prof Jon Stone and colleagues from The Universities of Edinburgh and Groningen in the Netherlands tracked the outcome of more than 100 people with FND. In their initial studies 14 years ago, the team found that FND was 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.

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 findings revealed that levels of physical disability and distress remained high, even after 14 years, leading to persistent and sometimes, disabling problems.

FND is often described 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. Doctors can sometimes be reluctant to diagnose it for fear of making a mistake. But the team found mistakes are rare and this should not prevent doctors making a diagnosis using clinical signs, even if tests are normal.

Perceptions of FND have changed dramatically over the past 20 years but that doctors are still likely to dismiss patients as ‘imagining’ or ‘putting on’ the condition.

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 should also help clinicians provide a more realistic prognosis for patients with FND when it causes limb weakness and stresses the importance of active and targeted treatment which many of these patients didn’t have.

Professor Jon StoneCentre for Clinical Brain Sciences

The study was published in the journal 'Brain'.

Related links

Read the article: Gelauff et al. The prognosis of functional limb weakness, a 14-year case-control study. Brain, 2019. DOI: 10.1093/brain/awz138

Professor Jon Stone's profile

Functional Disorders research at the Centre for Clinical Brain Sciences

More about FND: www.neurosymptoms.org, www.fndhope.org.uk and www.fndaction.org.uk