Aaron shares “DOES BENIGN MS ACTUALLY EXIST? I was recently asked this thoughtful question. The most common definition of Benign MS is having had it for at least 15 years (since symptom onset) and having a disability score (measured by the Expanded Disability Status Scale or EDSS) of less than or equal to three. I have some concerns with this concept.

I have concerns regarding the sensitivity of the EDSS to pick up very real symptoms.

This includes sensitivity to detect the impact of pathologic fatigue and cognitive problems (two of the leading causes of loss of work amongst people with MS), for example. I am also concerned because a proportion of people with benign MS (upwards of 30% in some studies) later go on to have active disease.

Also, some folks assume they are benign while on a DMT. I would remind them that maybe part of the reason that they are doing so well is BECAUSE they are taking their a DMT 🙂 I certainly would discourage stopping a DMT for this line of reasoning.

Labeling someone “Benign” may contribute to bias AGAINST offering/considering various treatments (e.g. aggressive symptomatic management of a chronic MS symptom) because they have been deemed “not that bad”. In 2018, we can’t yet accurately predict ahead of time WHO is and WHO isn’t destined to have a benign course.

Someone who has quite disease can later have active disease. Someone quiet while taking a DMT might be so because of that therapy (at least in part”