Subjective onset of symptoms relative to diagnosis in Multiple System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP)

Background MSA and PSP have marked symptom-burden; diagnosis is often delayed. There are ‘red flags’ described for MSA and PSP e.g. falls, though the frequency and onset of certain symptoms within the disease trajectory has not been described. This study aimed to delineate the onset and pattern of 10 key clinical milestones in MSA and PSP. Methods This study recruited 47 patients over three sites in North-East England. 23 had an established diagnosis of MSA and 24 of PSP made by a consultant in movement disorder. Patients were asked about the onset of 10 key symptoms or milestones including need for a wheelchair, falls and speech disturbance. This was corroborated wherever possible with relatives and patient notes and clinic letters. A median time of onset relative to the time of diagnosis was then calculated for each of the ten key milestones for MSA and for PSP. Results In MSA the most frequently occurring milestones were speech disturbance (21/23) autonomic failure (20/23) and falls (18/23). Autonomic failure and falls had a median onset of −5.5 and −1 month before diagnosis whereas speech disturbance had a median onset of + 10 months after diagnosis. In the PSP group falls (22/24), speech disturbance (18/24) and need for wheelchair/acute hospital admission (13/24). Median onset was −18.5, +4 and +16/0 months respectively. Conclusions This work shows that autonomic problems precede diagnosis almost 6 months before diagnosis in MSA, thus considering symptoms of autonomic failure is vital to a prompt diagnosis. In PSP the median onset of falls was 18.5 months prior to diagnosis, earlier than might be expected and helpful in guiding diagnosis.