Multiple sclerosis (MS) is a disease of progression. Because of its unique properties, there is no set pattern. Each patient is unique and unto themselves.  For many people living with MS, it can be a waiting game. We wait for a diagnosis. We wait for the test results. We wait for new breakthroughs. We wait a lot. I wait a lot. 

My MS journey comes with a large windshield and extra strong headlights. They are there to warn me about what might be coming down the highway. When symptoms occur, a nagging thought causes me to wonder if it is a move toward the next stage. Mostly, it is a matter of living in today and making the most of it. However, there is always that twinge of not knowing. It is a game of sitting, waiting, and wishing I knew the future.  

After being diagnosed with MS, the second or third question patients might ask is what stage of MS status I am in? This often is when the terms relapsing, remitting, secondary progressive, and primary progressive come into play. While these stages clearly exist, they are not clearly defined by a hard line in the sand. There can be a fluidity between them. 

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When I was first diagnosed with MS, it was within the stereotypical age range of 35 to 50 years old. Although it was at the latter end of the age range, they still felt that the discovery was well-timed. My provider was quite optimistic that I was relapsing/remitting. This may have been good news to them, but it was still worrisome for me. According to clinical data, African-American women living with MS progress to secondary MS at a faster pace than their white counterparts.

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I was armed with information about MS progression in black women. Yet, I still failed to ask my provider what factors were included when deciding my diagnosis. Had they seen the research that indicated there could be matters that might be of special concern for me? This highlights why it is essential that there is diversity in clinical trials: greater understanding of how MS expresses itself in non-whites. 

An MS diagnosis comes with asterisks. Not everything will apply to you, but most of it can. As I wait for more clinical research that is centered on African-Americans living with MS, I find myself back at square number 34. I am wondering when I will be moving forward and by how many steps.

Healthcare professionals juggle a lot of priorities during an appointment. There is pressure to be more efficient with less while giving patients more. They strive to give as much personalized care as possible. Being taxed with reviewing additional data can leave one feeling overwhelmed until one considers the outcome. 

On the other end of that work is an MS patient who is living with a double whammy of uncertainty. They worry about what the research indicated and if that data is relevant to them. That other step of learning more about research geared toward those who have been traditionally marginalized adds a layer of certainty we usually miss out on. That means fewer of us out there on our own. Sitting. Waiting. Wishing we knew.