A major argument against early treatment of MS is that ‘I may have benign MS’, therefore treating me with DMTs is unnecessary as MS is not going to affect me very much in the long-term. I agree if you have benign MS then you don’t need treatment. However, the difficulty with making a diagnosis of benign MS early on in the course of the disease as been stressed many times before on this blog. This is why a wait-and-see approach to defining your prognosis, should be an active wait-and-see approach. Not the go away and come back and see me when you have a relapse. Most MS disease activity occurs at a sub-clinical level which is why we need MRI monitor to assess MS disease activity. As more data emerges the more sophisticated MRI and biomarker techniques will be needed, to measure more subtle signs of damage.
The population based natural history study of MS below is probably the best there is in relation to defining benign MS. These pwMS were diagnosed between 1950 and 1964 (the year of my birth) and were followed for up to 50 years. Their chances of having non-progressive disease at the 50 years was 14%; i.e. 1 in 7 pwRRMS had not become progressive by then. Early features that predicted a non-progressive course were complete remission after the first attack, low or moderate initial relapse frequency and possibly a clinical course dominated by sensory symptoms. I suspect if they had MRI back when this study was started then a low lesion load (zero or less than 2 lesions) would also have helped. The important thing to note is that transition to SPMS still continued to occur after forty years of follow-up. MS is truly a life-long disease.
Who makes the decision about risks and benefits that affect you. Should it be the regulators (FDA or EMA), payers (NICE, NHS or insurance companies), national neurological associations, your neurologist, your MS nurse, you or someone else?
Background: MS may have a non-progressive symptomatology for decades; however, it is not clear whether the disease activity may abate completely.
Results: For pwMS with an initial relapsing-remitting course and multiple sclerosis diagnosis according to the Poser criteria (n = 202), the probability of non-progressive disease after 40 years was 22% (standard error 3.0%), and after 50 years it was 14% (standard error 3.2%). For attack onset including pwMS with possible multiple sclerosis, the corresponding probabilities after 40 and 50 years were 35% (standard error 3.3%) and 28% (standard error 3.5%), respectively. At the last follow-up in 2009-10, when pwMS reached the average age of the Swedish population life expectancy, only 13 pwMS from the MS diagnosis cohort, according to the Poser criteria, remained alive and non-progressive. Their annualized attack frequency diminished with time from 0.29 to 0.015. These pwMS had been functioning well socially. Nine pwMS had an Expanded Disability Status Scale score of 0-2.5, and four patients had a score of 3 or 3.5, with deficits dating back to attacks decades ago. Eight pwMS participated in a complete neuropsychological examination, which showed a slight difference (P < 0.01) concerning verbal memory and executive function compared to an age and socially matched reference group, whereas results for five other cognitive domains were within the normal range. Magnetic resonance images fulfilled the Barkhof-Tintoré criteria for multiple sclerosis in 10 of 11 pwMS, with conspicuously few subcortical lesions relative to extensive periventricular lesions and lesions extending from the inferior midline aspect of the corpus callosum.
Conclusions: Prediction of the non-progressive stage was possible with moderate hazard ratios and low sensitivity. Early features that predicted a non-progressive course were complete remission of the onset attack, low or moderate initial relapse frequency and-when the pwMS with possible multiple sclerosis were included-dominating afferent or sensory symptoms. The clinical disease activity had abated in these 13 pwMS, with the caveat that transition to secondary progression continued to occur after four decades, albeit with decreasing risk.