You never know what to expect from relapsing multiple sclerosis (MS). You could feel just fine one day. Then the next day you have double vision and it's hard to walk. Uncertainty is one of the biggest challenges of living with the disease.
Though you may never be able to predict when your symptoms will strike or which ones you'll have, there are things you can do to gain more control over MS.
What Makes MS So Unpredictable?
In the relapsing form of MS, the immune system that attacks myelin – the protective coating around nerves in your brain and spinal cord – can be unpredictable. This damage disrupts the flow of information from your brain to your body.
What makes the disease so hard to predict is the random way these attacks happen.
"You never know if and when you're going to have another one," says Dhanashri Miskin, MD, a clinical assistant professor of neurology at Jefferson Health in Philadelphia.
MS symptoms themselves are also random, depending on which part of your nervous system the immune cells target.
"If it's happening in the optic nerve, the symptom is blurry vision or vision loss," Miskin says. "If it's happening in another part of the brain or spinal cord, it could be weakness."
MS and Its Many Surprises
The diagnosis might have been your first surprise. Most people with MS are diagnosed in their 20s or 30s. They were healthy. Then all of a sudden, they had weakness, numbness, and other symptoms they never expected at that age.
"Often they're like, 'How did this happen?' And we don't fully have an answer for that," Miskin says.
The symptoms themselves can be surprising. You might have known that MS affects movement. But were you prepared for double vision, brain fog, or heat sensitivity? This condition can affect many parts of your body, including your sight, coordination, and thinking.
How well an MS treatment will work for you is also hard to predict.
"Even with the same drug, two patients can respond very differently," Miskin says. That includes having different side effects.
Not all MS surprises are bad, though. "A lot of our patients, when they're newly diagnosed, suspect the worst. They think they're going to have one attack after another," says James Bowen, MD, medical director of the Multiple Sclerosis Center at the Swedish Neuroscience Institute in Seattle. "But some people can go decades with no attacks."
Adapting to Life With MS
It's very normal to have an emotional response to your diagnosis. Miskin says her patients go through stages of grief such as shock, denial, anger, etc. They also have anxiety and depression. Lean on your family and friends for support. See a mental health professional if you need extra help to manage your emotions while living with the disease.
"I think everyone with MS should have a therapist or counselor from day one, because there is a huge mental health component to the disease," Miskin says. "It can be a lot to adjust."
Much of this disease is out of your control. Try to focus on the things you can control, like your treatment. Disease-modifying medications can reduce the number of relapses and prevent damage in the brain and spinal cord. People who start on the right medication early and stay on it tend to do the best, Miskin adds.
Lifestyle is another thing you can control. Stay active. Eat a Mediterranean or other anti-inflammatory diet. Control your blood pressure, blood sugar, and cholesterol levels.
"The better your health is overall, the less likely you'll be impacted by MS as it progresses," Miskin says.
How to Prepare for Progression
MS is a progressive disease. In most people, the relapsing form turns into secondary progressive MS within 10 to 25 years. Instead of attacks that come and go, the progressive form causes a gradual decline in the ability to walk, see clearly, and remember.
Some people change from relapsing to progressive MS faster than others. How quickly will you switch over? That's hard to say. Predicting MS disease courses isn't easy, says Bowen.
Researchers are studying new ways to predict progression. One method they're looking at checks for a biomarker called neurofilament (Nfl) light chains in the blood. But tests to predict MS progression aren't available just yet.
For now, your doctor will do frequent magnetic resonance imaging (MRI) scans to check the number of lesions in your brain and spinal cord. More lesions could mean faster progression.
Try not to compare your disease to other people's. Just because an MS influencer is in a wheelchair, that doesn't mean you'll need one.
"MS is truly different for everyone. No two people have the exact same experience," Miskin says.
Even though you could go decades without any problems, it is smart to plan for a future with MS. You might look into less demanding jobs, research long-term care options, or plan a move to a one-story home.
Keep a Balanced Outlook
Grief is normal when you're first diagnosed, but don't wallow in it. Get out and enjoy life, Bowen suggests. "Make room in your life for the joyful and adventurous things you can do."
The outlook for MS has improved a lot over the years thanks to new medications. Miskin wants her patients to think of MS as a chronic but manageable disease, like diabetes.
"If diagnosed early and treated with [an effective] drug, it can be managed very well," she says. "There's no reason that having MS should prevent you from living a normal life that includes marriage, children, and a career."
Show Sources
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SOURCES:
Dhanashri Miskin, MD, clinical assistant professor of neurology, Jefferson Health, Philadelphia.
James Bowen, MD, medical director, Multiple Sclerosis Center, Swedish Neuroscience Institute, Seattle.
Mayo Clinic: "Multiple Sclerosis."
MS Focus Magazine: "Putting the Pieces in Place: Planning Your Life with MS."
MS Society: "Two Thirds of People with MS Have Fears About the Future."
Multiple Sclerosis Trust: "Secondary Progressive MS."
National Institute of Neurological Disorders and Stroke: "Multiple Sclerosis."
National Multiple Sclerosis Society: "Relapsing-Remitting Multiple Sclerosis (RRMS)."
Neurology: Neuroimmunology & Neuroinflammation: "Neurofilament Light Chain Predicts Disease Activity in Relapsing-Remitting MS."
