How Long Does It Typically Take To Be Diagnosed With MS?

A. Scott Nielsen MD, MMSc
Virginia Mason Multiple Sclerosis Center


This is a difficult question to answer because what is a "typical" case of MS?
 
The time from the first symptom of demyelination to presentation in a doctor's office is going to depend heavily on where in the nervous system the injury is occuring.  For instance, if the injury is occuring in the pyramidal system (this is the circuit that involves strength and movement), then patients are much more likely to seek care early as opposed to a patient who experiences their first attack of MS (that produces symptoms) if it affects the sensory fibers (for instance, if there is a small area of numbness or tingling).  This is particularly the case in young adults who may rationalize symptoms away as something minor because MS (or any chronic illness) is not supposed to affect us in our most productive years.
 
With that said, there have been some researchers who have looked into the time from first symptom onset to diagnosis.  A group in Spain (Fernandez et al., Journal of Neurology 2010; 257(9); 1500-7) did just this and found that the mean time from first symptom to diagnosis is approximately 2.08 years, and the largest contributor to this delay was patients who waited an average of 19.2 months from first symptom to going to the doctor for the problem.
 
Since the diagnosis of MS is a clinical one (ie, we do not have a blood test--or any other test for that matter--that can definitely render an accurate diagnosis), there will be occasions where the diagnosis may be uncertain for quite some time.  Since MS can be mimicked by other disease states (in particular, diseases that are treated with therapies different than the MS therapies), it is very important to "get it right" to the extent possible.  While this can be frustrating for patients who struggle with the uncertainty of a diagnosis, it is too for the physician.  Obviously, more research is needed to identify biomarkers of the disease that can help us diagnose sooner (and with improved accuracy).  This is imperative as clinical trial evidence indicates that the sooner a person with MS is treated, the better the long-term outcomes.
 
A. Scott Nielsen MD, MMSc
Virginia Mason Multiple Sclerosis Center