3 no-nonsense strategies for living with MS

Some people call MS an “invisible” condition. That may be for a couple of reasons.

For one thing, MS (or multiple sclerosis) can go undiagnosed for years. And even after diagnosis, other people might not see anything wrong. 

“Memory loss, fatigue, pain, sensory changes are all symptoms that no one else can see when looking at someone with MS,” says Kendra Judd, PA, a neurology specialist at PeaceHealth in Bellingham, Washington.

March is National MS Education and Awareness Month. And experts estimate that about one million Americans have MS with just over 60% being women. Nearly 3 million people worldwide have the disorder.

While anyone of any age from anywhere can have MS, most people get diagnosed between the ages of 20 and 50, according to the National MS Society (NMSS).

Who gets MS

Judd notes that researchers don't fully know why MS develops, but some potential factors include things like: 

• Inherited traits. About 200 genes make it more likely for someone to develop MS.
• Viral or bacterial infections.
• Low vitamin D levels. This could explain why the condition is more common in areas farthest from the equator.
• Smoking.
• Obesity.

The risk of developing MS is about 1 in 333, according to the NMSS.

How MS affects the body

MS is a disorder of the body’s central nervous system, including the brain, spinal cord and optic nerves. It’s also considered an autoimmune disorder where the body’s immune system attacks the myelin sheath, a protective covering of the nerves and brain. 

You might think of the nerve fiber and cover as an electric cord with a frayed or worn coating. Damage to the covering disrupts communication signals between the brain and the body. Watch a video from NMSS that shows what this looks like.

While there may be many others, common symptoms of MS can include:

• Loss of or changes in vision
• Weakness or difficulty walking or moving
• Extreme tiredness
• Memory difficulties
• Mood changes
• Spasms
• Stiffness
• Numbness
• Pain
• Tingling

Everyone with MS has a unique experience. No two individuals share the exact same set of symptoms. 

Someone with MS may notice one or more symptoms to various degrees, from day to day. Symptoms can come and go. And they might get better or worse over time. Symptoms can also feel worse under times of stress, in the heat or when you’re sick, says Judd.

Diagnosing MS 

Diagnosing MS can be tricky. That’s because no specific tests can definitely show, without a doubt, that symptoms are caused by MS. 

Your doctor will usually start by reviewing your symptoms and health and then check your strength, balance, vision, hearing and nerve function.

Testing that might help find clues about the cause of symptoms may include 

• Blood tests.
• Magnetic resonance imaging (MRI) of the brain and spine.
• Spinal tap (testing a sample of fluid from the spine).

You and your care team will work together to determine what might be causing your symptoms.

Learn more about diagnosing MS from NMSS.

MS treatment and management

Currently, MS has no cure. But it’s helpful to talk with your primary care provider or neurologist if you have symptoms. “Early treatment is the best chance at keeping things from getting worse,” says Judd.

“Uncertainty” is one hallmark of MS. You might not know from one day to the next how your body will work. It may be one of the most difficult aspects of living with it. However, it is helpful to keep doing your normal activities, as much as you can, she says.

Here are 3 strategies to help manage MS symptoms:

1. Work with your medical team. Ask your healthcare providers for guidance on:

• Medications. There are about 20 medications now used to help people with MS. Which one, if any, is right for you? If you’re taking a medication, follow the directions. Call your doctor if you are having a problem with your medicine.
• Vitamin D. Would a supplement help? At what dose?
• Complementary or alternative treatments. Could acupuncture, massage therapy, marijuana, mindfulness or yoga relieve some of your symptoms?
• Smoking cessation. Smoking can increase problems caused by MS. See what programs or medicines can help you quit.
• Mental well-being. Tell your doctor if you feel sad, depressed or hopeless. Medicine and counseling can make a difference.
• Changes to your environment. An occupational or physical therapist can show you ways to make moving, dressing, bathing and eating easier. Consider these options:
  • Wear slip-on shoes. There are also clothing lines with magnetic closures (instead of buttons) that make it easier to get dressed.
  • Tack down or remove rugs to prevent tripping.
  • Put no-slip tape in the bathtub and install grab bars to steady yourself.

Read more tips on fall prevention.

2. Practice helpful self-care habits. You are your best advocate when it comes to doing what your body needs, such as:

• Water. Staying hydrated is essential.
• Exercise. Daily physical activity and exercise can reduce many of the symptoms of MS. Exercise might also reduce attacks (relapses). Use a cane, walker or scooter if your doctor suggests it. Work with a physical therapist on exercises that are safe for you.
• Nutrient-dense foods. Vegetables, lean proteins and healthy fats can reduce inflammation in your body.
  • If you have trouble chewing or swallowing, your doctor or a speech therapist may have you avoid certain foods or liquids.
  • Consider smaller meals or meal replacements, if you get full quickly or get tired easily when you eat.
• Sleep. Restful sleep can help restore your physical energy and mental wellbeing.
• Physical coolness. For many people, MS symptoms get worse when they are even a little bit hotter. This could be from the weather, a hot shower, exercise or a fever. Cooling vests, neck wraps, cool cloths, air conditioning and cool showers after exercise can help.

3. Give yourself grace. It’s hard enough to feel at the mercy of symptoms you can’t control. Being kind to yourself can ease some of the frustration. Show yourself some love with these:

• Stress reduction. Do what you enjoy, such as watching a show, listening to music or gardening.
• Mental activity. Read or do things like crossword puzzles.
• Social connections. Spend time with friends, family and others. You might also join a support group for people with MS.

While it’s hard for people to see this so-called invisible condition, there is hope and help for the millions who know all too well how real it is.