I am teaching on one of our MS Preceptorships this week and several of the pwMS, who kindly volunteered to share their stories, told the attendees that it took more than a decade for their MS to be diagnosed. This is not unusual. In a pan-European survey, performed by the EMSP (European MS Platform) on a large number of European people with MS, it took more than 1 year from symptom onset to be diagnosed with MS in the majority of respondents (>70%). The average time to diagnosis was over 8 years (slide 26 below). Why? Is it access to doctors? Is it denial, i.e. a reluctance to seek medical attention with minor neurological symptoms? It is the failure of the GP, or family doctor, to interpret subtle neurological symptoms and refer patients to a neurologist? Is is the misinterpretation of symptoms and referral of the patient to the wrong HCP, for example to an orthopaedic surgeon or a neurosurgeon? Is it delayed referral from the general neurologist to the MSologist? Is it poor access to MRI, and other diagnostic tests?
If we continue to make the case that ‘Time Matters in MS’ then we at some point in time we are going to have to try and reduce the time to diagnosis. Any delay in time to diagnosis means a delay in treating MS, with or without a DMT or other treatments. The latter treatments include symptomatic treatments, physical therapies, treatments for comorbidities, and lifestyle and wellness interventions.
Can you please let us know if your diagnosis was delayed and what the cause of the delay was?