Gray Matters: The Basics of Multiple Sclerosis

Key Points

• Multiple sclerosis is an autoimmune disease that affects the central nervous system: the brain, spinal cord and optic nerves.
• A study showed that people with Epstein-Barr virus were 32 times more likely to develop MS than those with other viruses.
• Multiple sclerosis does not affect fertility or increase the risk of miscarriage. Pregnancy does not increase the risk of relapse or long-term disability.

I wake to a feeling of heaviness in my limbs and a thrumming in my muscles, making me doubt my ability to stand or walk. Is it the remnants of the cold I've been fighting for the past 10 days? A reminder that I'm not as young as I used to be and I need to get more exercise?

Or is my multiple sclerosis (MS) reminding me that it's always there, ready to assert its presence in my life?

Living with MS

My body wants me to stay in bed, but I'm a freelance writer who has already lost a day and a half to this exhaustion. If I don't write, I can't pay the bills.

So, I throw off the covers, plant my feet on the floor, and will myself into another day in the gray world of an MS diagnosis.

It's the kind of day I share with so many of the almost 1 million people in the United States who live with multiple sclerosis.

What is MS?

Multiple sclerosis is an autoimmune disease that affects the central nervous system. The central nervous system is composed of:

• The brain
• The spinal cord
• The optic nerves

Autoimmune diseases develop when our immune system malfunctions and attacks healthy cells, tissues and organs. While there are theories on why the immune system goes wonky, researchers have yet to find a definitive cause.

Multiple sclerosis is a demyelinating disorder, meaning it causes damage to the protective nerve fiber coverings in the central nervous system.

"The myelin sheath progresses the electrical impulses in your brain through your body," said Tamika Haynes-Robinson, Ph.D., a neuropsychologist at Orlando Health, based in Florida.

"They are integral for correct, quick and accurate motor functioning, thinking and some aspects of memory," Haynes-Robinson said.

When your body attacks the myelin sheath, it breaks down over time, short-circuiting the electrical impulses and causing a breakdown in cognitive or physical function.

A new study points to a cause of MS

Research suggests that a history of smoking, a vitamin D deficiency, teenage obesity and specific genetic factors can all play a role in the condition developing, according to Joey Gee, DO, a neurologist at Providence Mission Hospital in Mission Viejo, California.

New research seems to have revealed a possible clue to the cause of MS.

"We still don't know why the body begins to attack its healthy nervous system," he said. "But a study published in January 2022 revealed a close connection to the Epstein-Barr virus (EBV)."

Epstein–Barr is one of the known human herpesvirus types in the herpes family and one of the most common viruses in humans. The study showed that people with EBV were 32 times more likely to develop multiple sclerosis than those with other viruses.

"There's no guarantee that people who have Epstein-Barr will have their condition progress into MS," Haynes-Robinson said. "But those diagnosed with MS have had Epstein-Barr nine times out of 10."

The discovery is a significant breakthrough in MS research and there are whispers of hope that it may be possible to confront both diseases.

Currently, there is no way to prevent EBV, but according to Alberto Ascherio, professor of epidemiology and nutrition at the Harvard Chan School and senior author of the study, "an EBV vaccine or targeting the virus with EBV-specific antiviral drugs could ultimately prevent or cure MS."

Epstein–Barr is a herpes virus that affects 95 percent of adults in the U.S. and is spread via body fluids, primarily saliva, blood, and semen—during direct and indirect contact—blood transfusions, and organ transplants.

You can get the Epstein-Barr virus by sharing a drinking glass or touching a toy a child has drooled on.

Most people don't notice any symptoms, but some people may experience the following symptoms following a EBV infection:

• Fatigue
• Fever
• Inflamed throat
• Swelling of the lymph nodes in the neck
• Enlarged spleen
• Swollen liver
• Rash

Although fatigue may linger, other symptoms generally dissipate in two to four weeks. Even after recovery, the virus can reactivate anytime.

Common signs and symptoms of MS

MS symptoms are wide-ranging and unpredictable, which is one of the reasons the disease can elude diagnosis. People can experience one or more symptoms that come and go or experience a variety of symptoms over time.

My first symptom was tingling that began in my feet and gradually advanced up my legs. The feeling slowly faded, and a few weeks later, I experienced a squeezing sensation around the left side of my torso—a symptom I later discovered is dysesthesia or the "MS hug."

Loretta Gentile, 59, of Hawley, Penn., had a more dramatic experience. She was diagnosed in 2017 but believes she began experiencing symptoms much earlier.

"I was probably 17 and walking along the road with my then-husband and cousin," she said. "All of a sudden, I could not walk. I needed to be carried home."

Denise Peterson's symptoms began in 1991 and came on more slowly.

"I started noticing that when I was in a situation where there was a lot of visual information, I couldn't pick things out. My visual processing speed was very slow," said the Naples, Florida resident, providing the following example.

"You could show me a photo on your phone, and I would say, 'Wow, that's a great looking brown dog,' when you are actually showing me a photo of a brown shoe," Peterson said.

The most common symptoms of multiple sclerosis include:

• Bladder and bowel dysfunction
• Cognitive changes
• Depression
• Difficulty with walking
• Emotional changes, including anxiety, mood swings, irritability and episodes of uncontrollable laughing or crying
• Fatigue
• Pain and itching
• Sexual problems
• Spasticity, or feelings of stiffness and involuntary muscle spasms, most commonly in the legs
• Vertigo and dizziness
• Vision problems, including optic neuritis (swelling that damages the optic nerve, causing pain with eye movement and temporary vision loss in one eye) and neuromyelitis optica (an autoimmune disease that affects the optic nerve, causing pain in the eye and vision loss)
• Weakness

Less common symptoms of multiple sclerosis include:

• Breathing problems
• Hearing loss
• Loss of taste
• Seizures
• Speech problems, including slurring and loss of volume
• Swallowing problems
• Tremors

Myths and Misconceptions

Despite the growing prevalence of MS and advances in treating the disease and delaying its progression, misinformation persists.

Here are eight common misconceptions about multiple sclerosis:

Myth: You will eventually need a wheelchair. Only 20 percent of people with MS need a wheelchair, crutches or a cane 15 years after onset.

Myth: You will not be able to work. Many people with MS remain in the workforce long after their diagnosis.

Myth: Only older adults get MS. Most people experience their first symptoms between the ages of 20 and 40.

Myth: You can't exercise with MS. Most physicians will encourage physical activity to improve fitness, functional ability and quality of life.

Myth: You don't need medication if your symptoms are mild. Symptoms are often mild and easy to cope with early in diagnosis, but early and ongoing treatment can help slow the progression of MS.

Myth: If you have MS, you should not get pregnant. Multiple sclerosis does not affect fertility or increase the risk of miscarriage. Pregnancy does not increase the risk of relapse or long-term disability.

Myth: You will pass MS to your children. There is no evidence of multiple sclerosis passing from parent to child in a predictable way, although children of parents with MS are 10-20 times more likely to receive an MS diagnosis.

Myth: Multiple sclerosis is a terminal illness. MS is not a fatal illness though one study reported it reduced a person's lifespan by seven years. However, the same study showed that the average lifespan of a person appears to be gradually increasing.

MS Prevalence is Increasing

Multiple sclerosis is the "most common progressive neurological disease of young adults worldwide," indicated a 2017 study.

The prevalence of MS in the U.S. was 309 per 100,000 (727,344 adults) in 2010, compared to 363 per 100,000 (913,925 adults) in 2017.

There was a higher occurrence in the Northeast and Midwest than in the South and West.

The increase in prevalence rate may partially reflect the aging of the population with improved survival and earlier diagnosis of multiple sclerosis thanks to advances in neuroimaging, the study noted.

With MS, gender, geography and genetics (may) matter

Here are a few more random facts about who is more likely to be diagnosed with multiple sclerosis:

• Autoimmune diseases are more common in women. Biological females are three times more likely to develop MS than biological men.
• People of Northern European descent have the highest risk of developing multiple sclerosis, regardless of where they live.
• People with biological relatives who have MS are 35 percent to 75 percent more likely to develop the condition. (I have an aunt and two cousins with the disease.)
• Children of parents with MS are 10 to 20 times more likely to develop the condition.
• If one identical twin has MS, the other has a 1 in 5 chance of developing the condition. That chance drops to 1 in 22 with non-identical twins. (Peterson is an identical twin whose sibling was diagnosed with MS before she was.)

While it's easy to get frustrated with an MS diagnosis, Gee urges optimism.

"I always remind my patients to never give up hope," he said. "We are continuing to research new treatments to reduce symptoms and relapses, with the hope to someday find a cure."

Online resources for MS

Many trusted websites are providing authoritative and useful information about multiple sclerosis. Here are helpful resources from trusted sources:

• Centers for Disease Control and Prevention: About Epstein-Barr Virus
• Ms Focus: Multiple Sclerosis Foundation: My Focus Magazine
• My MS Team: A social platform providing blog posts on a variety of MS-related topics
• National Multiple Sclerosis Society
• The MS Society (UK): Living with Multiple Sclerosis
• The Multiple Sclerosis Trust (UK): The Risk of Developing MS

The bottom line

An MS diagnosis is not the end of the world, but it will require adaptation. Christina Applegate uses humor to deal with her MS. How will you handle your diagnosis?

No matter how you cope with the changes to your daily life, it is important to begin treatment whether or not your MS symptoms are severe. Speak to your healthcare professional for guidance and never be afraid to get a second opinion.