Slow Burn

I haven’t written for a while because a lot has been going on in my life – primarily that I moved across the country, from Chicago to New Jersey. I’ve also been traveling a lot for work, which isn’t new, just a new routine now that I’m in a different location. The inspiration to write has also been a little slow, to be honest; not sure if it’s writer’s block or just my brain feeling too tired to be creative.

I also haven’t been feeling awesome. My legs and feet, the primary drivers of my annoying and unpleasant symptoms, have been particularly uncooperative in the past six months or so. The sensory issues and leg weakness seem to come on more quickly than they used to. This is particularly frustrating as I’m trying to get to know my new neighborhood by walking around.

It’s also been a problem while I’m working out – my left foot starts to go numb about 10 minutes into a spin bike ride or elliptical session (there’s “feel the burn” and then feel the BURN-ing sensation, you know what I mean?). And of course, my new companion, fatigue, has been lingering – typically stopping by around 3 PM on a weekday.

I had an appointment with my neurologist this week. I came very prepared as usual, with a page of notes and questions I wanted to make sure I asked (my doc likes to rib me on this; “I see a lot of notes there…”). Chief among the questions: if my MRIs consistently show up as “stable” lately, why do I still feel so bad? And why am I feeling worse than before?

Stable MRIs are the goal and technically do mean the treatment is working…but my doctor also told me his goal for me is that my MS is boring. It’s been anything but, unfortunately.

We talked through my symptoms and challenges, and his thinking is that my symptoms are likely not signs of clinical progression (phew!) but could be an “unmasking” of some left-over issues from prior lesions – made worse by stress. But it could also be “smoldering MS” that doesn’t show up on an MRI.

So, what on earth is smoldering MS? It’s a new area of research that describes the “slow burn” of underlying inflammation in the brain – it’s a slow and hidden process that can keep MS active, even when you’re in remission.

According to Sanofi, “Deep within the brain of those living with MS, researchers have discovered that there is a ‘smoldering process’ underway. Some areas of MS in the brain remain continually active causing destruction – even in times of remission – when there are no relapses. Similar to slow-burning embers, this smoldering process within the brain is thought to drive disability regardless of where a patient is on the spectrum of disease – RRMS, PPMS, PRMS, and SPMS. This emerging science represents an overlooked hidden driver of disability.”

With smoldering MS, disease activity is happening in the background, even if disease-modifying therapies (DMTs) are effectively managing inflammatory attacks. This could mean a person with MS is not having relapses, but their symptoms like fatigue, brain fog, or physical issues, are getting worse, leading to a quiet but steady worsening of the disease. MRIs might not pick up on this inflammation, so it’s hard to detect.

While it’s weird to think of my brain as a fireplace with glowing coals, I am grateful to have an explanation for why I haven’t been feeling 100%. Having an answer definitely helps with processing (even if it’s not a fun answer). I’ll be switching my DMT and changing up some of my other medications, intending to help to improve my day-to-day symptoms.

The new information and changes feel a little overwhelming, but I’m happy to have some answers and feel like I’m starting on a new path. I’ve signed up for PT again and will get back into Pilates – both to help build strength in my legs.

I hope all of these new interventions help to put out the fire…I don’t like the idea of slow-burning embers up there.