Real people, real stories: MS in their own words

MS affects everyone differently, and the path isn’t always straightforward. You may experience subtle changes, even without MRI activity or relapses. To help you feel less alone in your MS journey, we’re sharing stories from people living with MS. This article will focus on what others do when symptoms start to change, and what may be causing it—the chronic smoldering process. Their experiences, in their own words, offer a glimpse into the realities of living with MS.

Changing symptoms

One individual living with MS shares her perspective on the impact of her changing symptoms:

“I loved that house but the stairs were just becoming far too difficult. I would have to haul myself up using my arms because I couldn't get up the stairs anymore and there was no place where we could put a downstairs shower.” 

—49-year-old female

This is an example of how mobility changes can impact daily life, especially for those with progressive forms of MS. When routine tasks become more challenging, like going up and down the stairs, it can signal changes in your MS. The following story highlights how another person living with MS found a creative solution, with a little help from her friend:

“My dryer is sitting on the stand my friend made me. It is much easier not having to bend down. My body just wants to keel over and when I bend I get really unsteady.”

—62-year-old female

By tapping into her support system, she found a way to help maintain her independence and work with her changing MS.

Learn more about how MS symptoms may evolve over time: Is It MS Progression?

Understanding the chronic smoldering process

You may be wondering how MS could be progressing even without a recent relapse. New research is shedding light on the processes that contribute to disability progression, even without relapses or MRI activity. As one person living with MS shared:

“…I have wondered why sometimes I feel like my symptoms are getting worse when my scans are clean… I have noticed my cognition issues and my fine motor skills bother me more as I get older. It is encouraging to know that there is research being done…. It was helpful to see that there is a reason that I feel as though I am having more symptoms and that it’s not just in my head.”

—30-year-old female

This story helps capture the frustration people living with MS often feel when experiencing worsening symptoms despite stable scans. MS involves two key disease processes: the acute process and the chronic smoldering process. MS care has been focused on the acute process, responsible for relapses and MRI activity, until now. 

The chronic smoldering process can gradually cause damage to the brain and spinal cord, which leads to disability progression. This process begins before the first symptoms are noticed and causes disability to slowly build up over time. Understanding the science and symptoms to look out for can help you recognize and address these subtle changes. 

To learn more about the processes of MS, click here.

MS is a very personal experience. What happens to one person might not happen to another. Whether you're dealing with changing symptoms or learning about the evolving science of the chronic smoldering process, sharing your experience with others may help you feel more connected, understood, and supported on your own MS journey.