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MS specialists and researchers propose redefining multiple sclerosis

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  • MS specialists and researchers propose redefining multiple sclerosis

    Two great articles on how researchers are proposing to redefine classifications of our disease. - Dave

    Redefining MS
    Lisa Emrich, Health Guide | June 07, 2014

    Multiple sclerosis is a complex disease which is difficult to describe and no two cases are identical. We know that it is a neurological disease characterized by clinical symptoms caused by demyelination in the central nervous system. We also know that the majority of the people who develop MS experience relapses, or acute attacks of new or worsening symptoms. Some people, however, experience a more steady progression of disability. Still others experience a combination of attacks and progression.

    Accurate descriptions of identifiable MS disease courses are important for communication, clinical trial design and recruitment, prognosis estimation, and treatment decision-making. Standardized descriptions based primarily on clinical aspects of MS were published in 1996 following a survey of international MS experts and consensus reached by the US National Multiple Sclerosis Society (NMSS) Advisory Committee on Clinical Trials in Multiple Sclerosis. These descriptions form the terminology currently used to describe four subtypes (phenotypes) of MS - relapsing-remitting, primary progressive, secondary progressive, and progressive relapsing.

    During the past 18 years, much has been learned regarding the pathology of MS including early manifestations of the disease which precede confirmed diagnosis. This increased understanding of MS and limitations in the current terminology used to describe MS prompted a re-examination of the disease subtypes by the International Advisory Committee on Clinical Trials of MS which convened in October 2012. Consensus and recommendations offered by the advisory committee were published online in the journal Neurology on World MS Day, May 28, 2014.

    - See more at:
    Renaming MS – Newly Released Guide for Clinicians
    Posted by Laura Kolaczkowski—June 7th, 2014

    How many times have you heard that no two cases of Multiple Sclerosis are the same? You don’t really have to answer that question because we all know the answer — a lot!! It has always left me a bit puzzled how if we all are so unique in our disease, how can they take all of us and fit us into a few narrowly defined categories.

    In 1996, a group of MS researchers and clinicians developed the listing of sub-types of MS to use to classify our types of MS1; these common names were based on the physical characteristics they could observe, known as phenotypes. The identified phenotypes were Relapsing Remitting MS (RRMS), , Secondary Progressive MS (SPMS), Primary Progressive MS (PPMS), and Progressive Relapsing MS (PRMS).

    Stop for a moment and think about what type of MS your doctor may have said you have, and then reflect on how often you wonder if that is really your particular form of this disease. I often wonder about my RRMS because I have only had a few dramatic episodes of relapses over many years, leaving me to wonder if maybe it could be SPMS or PPMS. It turns out doctors and researchers have wondered the same thing about MS and how could they better describe or classify our disease states.

    Recently, a group of over 30 MS specialists, including Fred Lubin, MD, the lead researcher for the 1996 study, took another look at the MS phenotypes in Defining the clinical course of multiple sclerosis: The 2013 revisions, and revised these descriptions for further clarity.
    Dave Bexfield