An often-invisible disease: MS treatment has made strides, thanks to research

Not even a decade ago, a multiple sclerosis (MS) diagnosis felt like the end of the world for many. Fast-forward to present day: MultiCare’s neuroscience and research teams are encouraged by how far treatment has come — and say that momentum is only growing.

“It’s a serious diagnosis,” says Kathleen Munger, MD, MSCI, MultiCare Neuroscience and Sleep Medicine. “But there’s a lot of hope and expediency happening. I don’t expect our progress to slow down anytime soon.”

What does need catching up, though, is public understanding of MS.

“It’s an invisible disease for most people,” Dr. Munger says. “When it does become visible, such as requiring a wheelchair, that’s what most people assume it always is.”

For MS Awareness Month, Dr. Munger and Tonya Stigger, clinical research coordinator for the MultiCare Institute for Research & Innovation, are sharing their expertise and celebrating how far we’ve has come in caring for those with MS.

What is MS?

MS is an autoimmune disease in which a person’s immune system attacks the body, specifically the myelin coating of the central nervous system, brain and optic nerves. These attacks cause lesions, which are only visible in MRI scans as either breaks in the blood-brain barrier or scar tissue, and range between 1mm to 4cm in length.

The primary types of MS include relapsing-remitting MS (RRMS), secondary progressive MS (SPMS) or primary progressive MS (PPMS).

“For most patients, it’s a relapsing disease where they start to feel mostly better and then it comes again,” explains Dr. Munger, a board-certified neurologist who specializes in neuroimmunology.

In cases of SPMS, neurologic function and disability worsens progressively after an initial RRMS period. Those with PPMS experience a worsening of neurologic function and disability as soon as symptoms appear (whether slow or fast), without periods of remission. Only about 15 percent of MS patients are diagnosed with PPMS, Dr. Munger says.

Every patient is different

Many factors play into how MS will affect a patient, but lesions can be one indicator.

“Some people have two lesions while others have too many to count,” Dr. Munger says. “More than 10 at diagnosis suggests they may have a more aggressive disease course.”

The most common symptoms include:

• Fatigue
• Mobility problems
• Spasticity
• Vision problems
• Numbness or tingling
• Weakness
• Vertigo/dizziness
• Bladder/bowel problems
• Pain/itching
• Cognitive changes
• Sexual problems
• Depression

Patients with SPMS and PPMS are more likely to experience worsening of symptoms to extreme levels, such as complete loss of mobility.

MultiCare researcher Stigger points out symptoms aren’t always visible or may occur infrequently, which can lead to a delay in seeking a cause. Dr. Munger adds there can be side effects from treatment, as well as other prolonged health conditions resulting from the symptoms of MS.

That’s why Stigger emphasizes the importance of participation in registry trials, which use surveys to better understand how patients respond to treatments after they’re commercially available. Responses allow them to identify trends, good or bad, that may change how medications are managed.

Known risk factors

MS impacts approximately two in 1,000 people in the United States. Of those, women are diagnosed at a rate of 3 to 1 compared to men and most often diagnosed between the ages of 20-40.

While data shows individuals of Northern European descent are at a higher risk of MS, Dr. Munger says it’s important to note that race and ethnicity data is skewed due to a history of health inequality and racism in research and medicine.

The cause of MS remains unclear, but there are some identifiable risk factors:

• The further north of the equator a patient spent their childhood, the greater the risk of developing MS, which may be linked to a vitamin D deficiency
• A history of smoking or intake of other inflammatory substances
• MS is not strictly hereditary; the child of an MS patient has an approximately two in 100 chance of developing MS
• Researchers are also exploring:
  • A link between the prevalence of specific human leucocyte antigen (HLA) molecules in the body and the development of MS
  • A link between having been diagnosed with mononucleosis (mono) and later developing MS

We’re making progress

While there is more to learn, Dr. Munger and Stigger say we now have a much better grasp on the disease than even 10 years ago.

It was only the early 1990s that the first MS disease-modifying treatment was approved, Dr. Munger says. The at-home injectable only modestly reduced the rate of MS relapses, but set researchers up for important advancements.

Since then, treatment options have expanded to include injectables, intravenous-infusions and several oral medications. Stigger adds that as research variety and availability expands, so will treatment options.

“One of the great advances we have made was the approval of Ocrevus for relapsing and progressive forms of MS,” she says. “Up until that point we didn’t have a go-to option for PPMS. That was monumental.”

Resources

• MultiCare Multiple Sclerosis Care Center
• Clinicaltrials.gov
• National MS Society
• Multiple Sclerosis Association of America
• Walk MS

Know your research options

MultiCare has numerous research initiatives MS patients may qualify for, ranging from registry to phase 4 drug trials. A complete list can be found online.

The benefits to participating are tremendous, Stigger says. Some people’s insurance may not cover a desired treatment, and many research sponsors cover the cost of travel, labs, imaging and visits for patients. For others, it’s empowering to be part of the future of MS care and to take ownership in their care.

“Participating in a clinical trial is unknown territory for many people,” she says. “Which may deter someone from participating.”

The MultiCare research team follows strict guidelines and protocols to ensure patient safety is always paramount, Stigger says. Participants have a dedicated research team, as well as a social worker, to provide quick access to their provider or discuss any changes or concerns.

“The goal is to treat not only the disease but the whole person,” she says.

The reality of MS care is that sometimes therapies stop working, Stigger says. That’s why clinical research is so important — it helps in developing new therapies and providing more care options.

If you have questions about MS, speak with your primary care provider or visit one of the resources below. If you are an MS patient with questions about research participation, visit see the resources below or visit the MultiCare Institute for Research & Innovation clinical trials website.