This Is What It’s Like to Get an MS Diagnosis

This Is What It’s Like to Get an MS Diagnosis

by Sue Jones
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Getting a multiple sclerosis diagnosis can be a lengthy process since it usually involves multiple steps. And, if you’re going through a potential MS diagnosis, it’s understandable that you might be more than a little frustrated with the experience.

Generally, doctors try to rule out other health conditions first since MS can be mistaken for other conditions, such as migraine. But knowing about the testing you may need to do and why it matters can go a long way toward making you feel confident that you and your medical provider have the situation under the best control possible.

Whether you’re undergoing testing for a potential MS diagnosis or you have a loved one going through the paces, let this be your guide to learning more about MS and what’s next in your journey.

Symptoms of MS

In general, MS symptoms happen because of damage to myelin, the protective sheath covering the nerves, according to the National Institute of Neurological Disorders and Stroke (NINDS). (Myelin is usually compared to the insulation coating on electrical wires.) When the myelin is damaged, your nerve signals can’t function properly, according to the U.S. National Library of Medicine.

There are known MS symptoms but they can vary from person to person. “It is different for many people,” Harold Moses, M.D., an associate professor of neurology at Vanderbilt University Medical Center, tells SELF.

MS tends to follow what’s called a relapsing-remitting pattern, where you have a flare-up of symptoms that’s followed by a period of remission with no symptoms that can last for months and even years, the Mayo Clinic says. About 85% of people with MS have this form of the condition, according to the U.S. Department of Veterans Affairs. But some individuals have primary-progressive MS, meaning that from the start, their symptoms get worse without periods of remission, according to Johns Hopkins Medicine. Eventually, people with relapsing-remitting MS can progress to secondary-progressive MS, which happens when symptoms get progressively worse, according to John Hopkins Medicine. (In this case, you may or may not have remission periods.)

MS symptoms can worsen when your nerves become damaged and don’t recover well, according to Nicholas Lannen, M.D., a neurologist at Spectrum Health. “That’s why the goal of treatment is to intervene early to prevent more injury to the nerves,” Dr. Lannen tells SELF.

Again, symptoms can be different for everyone, but the Mayo Clinic says that they may include:

  • Weak or numb limbs
  • Feeling an electric-shock sensation when you move your neck
  • Tremors
  • Trouble balancing
  • An unsteady gait
  • Vision problems, such as blurriness, double vision, or loss of vision
  • Eye pain
  • Fatigue
  • Dizziness
  • Tingling in your body
  • Sexual dysfunction
  • Bowel problems
  • Bladder problems

MS causes

Doctors don’t know exactly what causes MS, and why some people develop the disease while others don’t. “We know that it’s an autoimmune disease—the body is attacking itself—and there certainly seems to be a genetic predisposition,” George J. Hutton, M.D., medical director of the Maxine Mesinger Multiple Sclerosis Comprehensive Care Center at the Baylor College of Medicine, tells SELF. “Beyond that, it’s not really known.” Some experts believe that environmental factors, such as getting the Epstein-Barr virus, may trigger MS in people who are already at risk for the condition5.

MS risk factors

Although there’s no way to predict whether someone might develop MS, there are risk factors that could increase your chances of developing the disease. According to the Mayo Clinic, here’s what to know about MS risk factors:

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