Occasionally, readers submit questions regarding “late stage” or “end stage” MS.  People want to know about “stage 4” MS, advanced MS or MS at the end of life.  These questions are often difficult to answer, not just because of the sensitive nature of the subject, but due to the use of nonstandard terminology.

What are the types of MS?

Almost two decades ago, the National MS Society asked specialists in MS patient care and research to help develop a common language to use when discussing disease categories and characteristics.  Four types of MS were defined as relapsing-remitting MS (RRMS), secondary progressive MS (SPMS), primary progressive MS (PPMS), and primary relapsing MS (PRMS).

RRMS is the most common type of MS affecting approximately 85% of MS patients at time of diagnosis.  RRMS is characterized by episodes of distinct flare-ups (relapses, exacerbations) of acute worsening of neurological function.  With RRMS, relapses are followed by recovery periods as partial or complete remissions.  RRMS patients may experience residual symptoms between relapses, but they do not typically experience chronic worsening (progression) of the disease between relapses.

PPMS is relatively rare, affecting approximately 10% of MS patients at time of diagnosis.  PPMS is characterized by a near continuous worsening from disease onset with occasional plateaus or minor improvements, while the rate of disease progression may vary over time.  Patients with PPMS do not have distinct relapses or remissions.  

PRMS is also relatively rare, affecting approximately 5% of MS patients.  Like PPMS, primary-relapsing MS is characterized by a steady worsening of disease while patients experience the occasional relapse.  The main difference between RRMS and PRMS is chronic worsening or disease progression between relapses.  PRMS may have been (mis)diagnosed as PPMS until a relapse occurs which requires a change in diagnosis.

SPMS is the only type of MS which can be seen as a “next stage” of the disease progression.  Patients with SPMS began their MS journey as RRMS patients, whether or not they were diagnosed appropriately at that time.  The National MS Society states that “if left untreated, 50% of people with relapsing-remitting MS develop this form of the disease within 10 years of initial diagnosis.”  SPMS is characterized by a chronic steady worsening of the disease, with or without occasional relapses, incomplete remissions or plateaus in progression.  The difference between SPMS and PRMS appears to be in how the person’s MS journey began.

What are the stages of MS?

One way to view this question is to consider a person’s experience living with MS.  The first stage may include the recognition of unexplained symptoms which initially send a person to the doctor looking for answers, followed by the diagnosis itself.  The second stage might encompass a person’s experience in learning to live with the disease, while adapting to the challenges MS places in the road.  The next stage could be evidenced as the patient accumulates moderate disability.