What Happens if Multiple Sclerosis Goes Untreated?

Disease Course of MS Is Unpredictable

Some people with MS have only a mild-to-moderate level of disability, even 15 years after initial diagnosis. This is known as benign MS, but experts don’t agree on the exact definition of it. And the number of people with MS who fit the criteria drops over time, according to research published in 2020.

“The problem is, we have no way of identifying these people,” says Barbara Giesser, MD, a neurologist and MS specialist at Pacific Neuroscience Institute in Santa Monica, California. “We can’t tell at the outset if someone is going to have a very benign course or if their relapsing-remitting MS will move on to progressive MS.”

“Ultimately, it’s up to the patient what they want to do,” Dr. Giesser says. But, “Most MS-ologists and neurologists would recommend starting treatment once you have a diagnosis.”

What Causes Disability Progression in MS?

There are two main components that cause disability progression in MS, says Abbatemarco. “One is inflammatory activity in the central nervous system, and the other is neurodegeneration within the brain and spinal cord,” he says.

Neurodegeneration is the loss of structure and function of the nervous system, particularly the neurons, or nerve cells, of the brain.

The origin and development of the neurodegenerative aspect of MS is less understood, Abbatemarco adds.

In RRMS, inflammation appears to be the main driver of damage to nerve cells — and, therefore, symptoms — with less neurodegeneration occurring early in the disease process, according to the Multiple Sclerosis Association of America. In the progressive forms of MS, the opposite is thought to be true: There is predominately neurodegeneration and less inflammation.

“Right now, the MS medications address the inflammatory component of the disease,” says Abbatemarco. They can help prevent acute MS attacks, or relapses, which in turn prevents the residual symptoms and disability that can linger after a relapse.

Unfortunately, none of the current medications are as good at treating the neurodegeneration part of MS, but there are a lot of active clinical trials trying to answer that question, says Abbatemarco.

That means there are few treatment options for people with primary-progressive MS (PPMS), although the drug ocrelizumab (Ocrevus) has been shown to slow disability progression in some people.

Treatment Is Recommended for People With Active MS

Because it’s impossible to know what the course of anyone’s MS will look like, “It’s almost universal that we recommend treatment for patients with active multiple sclerosis,” says Abbatemarco. This means having relapses and MRI scans that show new lesions, or areas of damage, over time.

One reason it’s important to prevent MS relapses through the use of disease-modifying drugs is that there are no medications available to help with regaining any function that’s been affected by a relapse, he says.

Abbatemarco’s recommendations align with the American Academy of Neurology’s 2018 MS treatment guidelines, which were reviewed and confirmed in 2021. The new guidelines state that in most cases, it’s better to take medications for MS early, rather than let the disease run its course.

Treatment may be postponed during the MS diagnosis “odyssey,” says Abbatemarco. “In a patient where MS is suspected but not confirmed, we would be watching closely and having regular MRI monitoring if treatment hasn’t yet been started.”

Medication Is ‘One Piece of the Puzzle’ in MS Treatment

“When patients come to see us in the clinic, we spend a lot of time talking about disease-modifying therapies for MS, but that’s just one piece of the puzzle,” Abbatemarco says.

Rehabilitation, with the goal of improving and maintaining function, is also an important part of the treatment plan, he says. “We enlist the help of physical therapists, occupational therapists, neuropsychologists, and other members of the rehabilitation team to take a more holistic approach to treating MS and keeping the patients well.”

This includes a healthy diet and regular exercise, he says.

“We work to manage vascular risk factors, such as hypertension, diabetes, and smoking. We know that all those other pieces can also worsen MS, so keeping focused on wellness is truly important. I always emphasize the importance of a healthy lifestyle; it can be empowering for people to realize they have some control over their disease,” says Abbatemarco.

Work With Your Doctor to Find an MS Treatment Plan That Fits You and Your Lifestyle

“When discussing therapy options with patients, I always talk about the data: Overall, they will do better on disease-modifying therapies in the long term,” Abbatemarco says.

He points to the advancements that have been made in MS treatment over the past few decades. “The first therapy came out in 1993, and really through the 1990s and early 2000s, we only had a few choices for patients. Most of those were injectable therapies, which came with some significant side effects,” he says.

Today, there are more than 25 disease-modifying therapy options for people with MS, according to the NMSS. “There are a wealth of options, and we’re almost always able to find a medication that works with a patient’s lifestyle and with a side effect profile that’s manageable,” Abbatemarco says.

“People who are hesitant to start MS therapy or have concerns about their current treatment should have an open conversation with their providers, so they can find a drug that works for them,” he says.

If you’re unsure about your doctor’s recommendations, you can always get a second opinion. “It can be helpful to get another perspective about the available treatment options out there,” Abbatemarco says. “We absolutely know that good adherence to long-term disease-modifying therapy will lead to the best outcomes available.”