What I Wish I Knew About the Progression of Multiple Sclerosis

Multiple sclerosis (MS) is a disease that damages your nerve cells’ protective layer. The damage can lead to a range of symptoms—from fatigue to mobility issues. Usually, MS is progressive, meaning symptoms get worse over time.

Because MS can progress, healthcare providers need to closely monitor patients and their symptoms—sometimes adjusting treatment along the way—J. William Lindsey, MD, professor and director of the Division of Multiple Sclerosis & Neuroimmunology with McGovern Medical School at UTHealth Houston, told Health. 

But MS progression is complicated and somewhat mysterious, making treatment a challenge at times. “There’s a lot of uncertainty with patients about how bad it’s going to be,” said Dr. Lindsey. And with how many different symptoms MS can cause, it can be difficult—if not impossible—to try to figure out how the disease will impact each person over time, according to Dr. Lindsey. 

Since 1993, Dr. Lindsey has been working with people who have MS. He says there are a few things about MS progression he’s picked up along the way that medical school didn’t cover. Here’s what he wishes he had known from the start.

What do you wish you had known about the progression of MS?

J. William Lindsey, MD: One thing that we didn’t know in medical school was that progression probably starts at the very beginning of the disease. We used to think that nothing was happening in between [flares of the disease], but it’s become clear that progression is there from the start. That’s probably more important in causing disability than the relapses are.

What do you wish you had known about counseling patients about the progression of MS? 

Dr. Lindsey: I’ve learned that you do what you can as far as treatment. We do have some treatments that are pretty effective and make a big difference in the accumulation of disability. But one thing that bugs a lot of people about MS is the uncertainty. If people have a problem, they usually want to know how it’s going to play out so they can adapt to that and deal with it. MS doesn’t work that way. I’ve learned to help people realize that life is uncertain and they can’t change it. 

What do you wish you had known about helping patients manage emotions surrounding the progression of MS?

Dr. Lindsey: I never learned about that—it’s not something we were specifically taught. There was a bit of coaching on how to respond to people with different types of loss of function but, after that, it’s just responding to patients as a human being. You need to use your imagination to try to understand what it would feel like for them to go through this.

What do you wish you had learned about helping patients manage MS progression in early and middle adulthood?

Dr. Lindsey: There was nothing in school that dipped into that. The general approach is to encourage people to do whatever they want to do. 

A lot of patients are fearful—they don’t want to embark on something that may take a long time to come to fruition because they’re worried that MS will prevent that from ever happening, like having kids or getting a new degree. 

I’ve learned the importance of encouraging people to go ahead and do whatever they want to. I tell patients to not worry about the MS until it actually is a problem—for many, it’s not, and a lot of patients with MS do quite well over the long run.

What do you wish you had known about monitoring the progression of MS?

Dr. Lindsey: We still need better tools there. What you can measure with physical examinations and evaluating patients in the clinic visit are somewhat subjective. It’s hard to tell if things are actually getting worse or if people are having a down day. After the first few years of having the disease, there are not a lot of changes on an MRI scan. This makes it difficult to tell whether what you’re doing treatment-wise is having a benefit. 

What about the doctor-patient relationships you form?

Dr. Lindsey: I’ve learned that these are important. I have people who have been with me for almost 30 years. You do form relationships with people, and it’s helpful for the patients to have a consistent person who they’re dealing with for their healthcare. It’s comforting for them to see a familiar face.