Benign MS: misinterpretation or misrepresentation?

What is benign MS? #MSBlog #MSResearch 

This is a second reposting in response to the debate around benign and non-benign MS! The posts are from 11 May 2012 and 07/11/2012. 

"I was at a meeting in Liverpool this week and was told by someone in the audience that "I don’t believe in benign MS". This is not correct; I was being misquoted. My stance has always been that you can’t make a call on benign disease up front; benign MS is a retrospective diagnosis. I have seen too many disabled MSers who were told early in the course of their disease that as they have benign disease they don’t need DMTs. I even feel uncomfortable calling MS benign when someone fulfils the contemporary definition of having benign MS, i.e. a disease duration of at least 15 years with no disability (EDSS < 3.5). We know that the majority of these MSers will have significant cognitive impairment when tested and over half suffer from MS-related fatigue. In addition, less than half of these people will have benign disease in 10 years time." 


"The following is the standard list of good and bad prognostic factors that we use to try and predict prognosis; most of these factors were identified in the pre-DMT era and whether or not they hold true in the era of more effective DMTs is a moot point." 


“Please be wary of the diagnosis of benign MS; don’t let it lull you into a sense of false security. Given sufficient time the majority of MSers will become disabled if the disease is left to run its natural course.”

Other posts of interest:

Multiple Sclerosis Research: Research: Benign MS is not Benign
26 Apr 2012
OBJECTIVE: Using conversion to secondary progressive (SP) multiple sclerosis (MS) as cutoff event for selecting patients with benign course, we tested which baseline features affects the probability of becoming "no longer ...

Multiple Sclerosis Research: Brain atrophy in benign MS
29 Nov 2011
CONCLUSIONS: Serial magnetic resonance imaging revealed a low 2-year rate of brain atrophy in MS'ers with clinically benign MS, suggesting a less prominent degenerative component in its pathogenesis than in patients ...

Multiple Sclerosis Research: What is benign MS?
29 Nov 2011
METHODS: 163 benign MS'ers (defined as disease duration > or = 15 years and Expanded Disability Status Scale (EDSS) score < or = 3.0 ) underwent neuropsychological testing on the Rao's Brief Repeatable Battery (BRB)* ...

Multiple Sclerosis Research: Education: defining the course of MS
23 Feb 2012
Unfortunately, there was no consensus regarding other definitions including chronic progressive, benign and malignant MS. Because the definition of these latter terms is unclear, their use is generally discouraged in scientific ...

Multiple Sclerosis Research: Defining what a cure means in multiple ...
06 Apr 2012
... in central London yesterday (5th April 2012) and we got onto the usual discussion/debate about early aggressive treatment vs. watchful waiting so as not to expose too many MSers, destined for a benign course, to the risks ...

Multiple Sclerosis Research: Research: Clinical Course and ...
12 Mar 2012
Benign MS is relatively-low activity disease following onset. This is reported to occur in about 25% MSers with up to 25-30years of follow up. This current study looks to see how Benign is Begin MS and shows that it does occur ...

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