Monday, March 17, 2014

National MS Awareness Month || The Four Faces of MS


Eight-five percent of all MSers have what is known as Relapsing Remitting Multiple Sclerosis (RRMS). What this means is that it is characterized by a waxing and waning of symptomology. Those with RRMS talk about having flare ups or episodes or attacks or exacerbations, which may or may not be evidence of disease progression. Between these periods of relapse, there are relatively calm periods of remission.

These periods are mostly easy to get through, but certain ongoing symptoms can still crop up as part of that person's "new normal" as defined by where their MS has taken hold in their central nervous system. My lesions, for instance, are near the hypothalamus and the frontal lobe, so even during remissions (which is where I am right now), I still have problems with thermoregulation (because of crossed signals in my hypothalamus), fatigue and cognitive function (because my frontal lobe signals are challenged by the lesions there). These are markers of my new normal and I will probably always have these symptoms even when I'm feeling great otherwise.

For those with RRMS with lesions which impact mobility, they may still have some issues using a foot or a hand because that is where their lesions reside, but they might get around a bit better when not in relapse mode.

However, there are some other, lesser known forms of MS which are more rare than RRMS and more antagonistic as well.

Secondary-progressive MS (SPMS) occurs for a very small number of people who, after having a relapse, continue to progressively worsen. There is no remission period between attacks. There's no way to predict whether someone encountering an MS relapse will suddenly progress to SPMS. Those with RRMS often quietly fear this will be their reality (myself included). The threat of a permanent downturn is scary indeed.

Primary-progressive MS (PPMS) is a even rarer form of MS in which the person experiences a slow, steady worsening of MS from its onset, with no distinct periods of relapse or remission. They are more or less living a life of steady relapse from day one and often cannot recover.

To confuse the issue, there is also a variety known as Progressive-Relapsing MS (PRMS): This is the least common of all the MS types and is distinguished by a steady progression in disability, usually revolving around the use of the legs and walking. People with PRMS initially appear to have PPMS.

Remember, there is no cure for any version of MS. It's also important to highlight these variations of MS because ALL of the current medications out there designed to treat MS are for RRMS. None of them can help those who suffer from SPMS, PPMS or PRMS. This is where the research deficit is greatest; right now the emphasis is on finding disease modifying treatments for the majority of sufferers (RRMS) but that means little money, effort, focus and time can be dedicated to these rarer forms. I'm hopeful that newer treatments for RRMS will be successful over time (we still have to test them on large populations over time), so that research can then turn their money, efforts, time and focus to understanding the other forms, so these people can get some relief as well.