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Living with Multiple Sclerosis: 3 Things Patients and Families Should Know

02/06/24 Michael C. Levin, MD, College of Medicine, University of Saskatchewan;

Multiple sclerosis (MS) is a common disorder, and the journey to that diagnosis can be complex and challenging. MS is an autoimmune disease that affects the brain and spinal cord. It’s unpredictable and can’t be cured. Every case is different, which makes identifying and treating it more difficult.

Yet MS is not the devastating diagnosis it once was. Several effective treatments are available and can help people get a handle on the disease. Understanding more about the condition can help reduce the stress and anxiety around MS and help patients prepare for conversations with their doctor. Here are three things everyone should know.

1. Several factors increase the likelihood of being diagnosed with MS

Most commonly, multiple sclerosis begins between the ages of 20 and 40, but it can start anytime between ages 15 and 60 years. It is somewhat more common among women. Multiple sclerosis is uncommon among children.

The cause of MS is unknown, but a likely explanation is that people are exposed early in life to a virus (possibly a herpesvirus or retrovirus) or some unknown substance that somehow triggers the immune system to attack the body’s tissues. In fact, recent research looked at 955 active-duty military personnel who were diagnosed with MS and found that the risk of MS increased 32-fold after infection with the Epstein-Barr virus, which is a type of herpes virus.

Genetics can also play a role. Having a parent or sibling with this condition increases the risk of acquiring the disease. One more factor people should be aware of is where you grow up. MS is far less common in sunny climates. Researchers believe this risk factor has to do with exposure to sunlight and vitamin D. Low levels of vitamin D can double the chances of being diagnosed with MS later in life. Vitamin D levels later in life do not appear to impact the chances of developing MS.

2. Signs and symptoms vary – and may go away on their own

MS can affect any part of the brain or spinal cord, and symptoms can vary significantly from person to person and from episode to episode. Early symptoms include:

  • Tingling, numbness, pain, burning, and itching in the arms, legs, trunk, or face and sometimes a reduced sense of touch
  • Loss of strength or dexterity in a leg or hand, which may become stiff
  • Problems with vision

The symptoms often come on (known as relapses) and lessen (known as remission) seemingly without rhyme or reason. Before an MS diagnosis, experiencing these symptoms with relapses and remissions can be confusing and stressful. It can be helpful to pay attention to the timing of the symptoms. Neurological symptoms caused by something like a stroke happen very quickly – an individual suffering from a stroke can lose vision in under a minute. With MS, symptoms tend to develop more slowly, with a patient losing vision or developing double vision over a day or two. What’s more, MS symptoms can go away after a period of time.

3. Treatment can significantly reduce relapses

For individuals without an MS diagnosis, they may be tempted to ignore symptoms after they disappear. But it’s crucial to work to uncover the cause of the symptoms and discuss them with a healthcare professional. It’s the first step in diagnosing the condition and beginning treatment. Patients should talk to their primary care physician and advocate for a referral to a neurologist for imaging. Magnetic resonance imaging (MRI) is the best imaging test for detecting MS. Be patient with providers as they work to rule out other potential causes for the symptoms.

Once MS is diagnosed, treatment can significantly extend periods of remission. On average, individuals experience a relapse every one or two years. But with treatment, that can be extended to 10 or even 20 years between relapses. Based on the condition and its symptoms, neurologists can guide patients toward the most effective treatments and medications.

For more on MS, visit the Manuals page or the Quick Facts on the topic.