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I’ve had multiple sclerosis for almost 20 years now. I’ve been there, done that, and gotten the T-shirt when it comes to anything MS related. I also write about the MS patient experience, so I am constantly researching. I started an MS blog back in 2008 and have been able to capture MS moments in history such as when the first oral MS treatment came out in 2010. When MS news breaks, I like to research and report on it from the perspective of a person living with MS. 

Imagine my surprise when my coworker told me something about MS that I had never heard before. She taught me about smoldering MS, also known as the smoldering effect of MS. Even though it is a new concept to me in terms of research, it is something I always subconsciously believed was happening to me and my MS.

According to MS One to One, scientists now believe there are two processes that explain how MS works: the acute process and the chronic smoldering process. The acute process causes relapses and MRI activity, while the chronic smoldering process causes changes to your physical and cognitive abilities over time. Picture a fire blazing burning bright. The blazing fire represents an active MS relapse. Once the fire burns out, the area around it smolders. For MS, after the relapse has ended the disease is still progressing, or smoldering, leading to physical and cognitive changes that aren’t seen on an MRI.

As an MS patient, my MRI may look stable but my disease still may be progressing. It could explain bouts of fatigue, brain fog, or problems with balance continuing long after the MRI is stable. It also raises the concern that if they can’t see my progression on an MRI, how can we recognize and treat the symptoms?

To me, smoldering MS makes perfect sense. I had a relapse in 2016 that resulted in right side weakness including my right leg. When the relapse was in the acute, or active phase, I couldn’t move my right leg at all. Once the relapse passed, I gradually regained functionality in my right leg and was able to walk again. After smoldering for eight years, I now have slight limp on my right side which continues to get slowly worse like a fire smoldering to ash.

I have always believed this was happening, but could not explain it until I learned about smoldering MS. For me, things that used to come easy aren’t coming as easy anymore. Work is becoming hard and harder as my attention to detail fades. I am more and more fatigued. Each day feels like it takes substantially more effort to get from one day to the next. Even though I am not in active relapse, my MS is still smoldering. 

Now that I know about smoldering MS, there is an extra incentive to live a healthy lifestyle. This means to limit foods that cause inflammation; exercise and strength train (for me especially in my weak right leg); seek therapy such as physical, occupational, or speech therapy; and play games that help with memory and cognition. Taking a healthy approach may help with the smoldering effects of MS.