Diagnosing idiopathic dystonia: must it take so long?

Idiopathic dystonia is a chronic, disabling movement disorder. This study attempted to verify anecdotal evidence that sufferers experience delay in achieving a correct diagnosis. A survey of 133 patients revealed that diagnosis after first seeking help required a mean of 3.8 years. Diagnostic latency varied considerably, with 22 per cent of respondents reporting a diagnostic latency of more than five years, while a further 22 per cent reported a latency of one month or less, with a sample median of 1.5 years. Respondents consulted a mean of 8.3 practitioners, including a mean of 2.1 general practitioners and 1.6 neurologists. Results were consistent with reports of lengthy diagnostic delays and inappropriate referrals. Greater awareness of dystonia and referral of suspected cases to a neurologist interested in movement disorders are recommended.