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FAQs About Multiple Sclerosis – HealthyWomen

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Multiple sclerosis (MS) is a chronic health condition that typically affects people who are 20 to 40 years old. And women are twice as likely to have the disease as men.

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If you have MS, it can be a sometimes scary and uncertain diagnosis, but with the right treatment, you can help control symptoms. Here are the answers to some frequently asked questions about MS.

What is MS?

MS is an autoimmune condition that causes the immune system to attack healthy tissue. In this case, it’s healthy nerves and myelin, which make up the protective layer covering nerve fibers in the spinal cord and brain. Myelin helps your brain and spinal cord — part of the central nervous system (CNS) — communicate with the rest of your body.

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Watch: How MS Affects the Central Nervous System >>

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When the immune system attacks these electrical pathways, it can cause scarring, called sclerosis, in the CNS. Your symptoms will depend on where scarring occurs in the CNS. Over time, MS can cause permanent damage to nerves.

There are several forms of MS, with relapsing-remitting MS being the most common. Of all the people who have MS, 8 out of 10 of them will have relapsing-remitting MS. Relapsing-remitting MS means symptoms can come and go. An MS attack, or flare-up, means you’re actively having symptoms. Remission is a period when your body feels as it did before the flare, but it doesn’t mean your symptoms completely disappear.

Is MS genetic?

There isn’t a specific gene that causes MS and gets passed down from parents to children, but you might inherit how likely you are to get MS.

Research shows multiple genes can play a role in developing MS. In fact, variation in one gene known as the HLA-DRB1 is the biggest genetic risk factor for getting MS. This gene variation might have some part in how the immune system attacks the myelin sheath and nerves.

What are the signs and symptoms of MS?

MS can cause a variety of symptoms, and the symptoms each person has can be different from another person’s.

Early symptoms of MS can include:

  • Blurry vision, seeing double or pain in the eye with movement
  • Muscle weakness in the hands and legs
  • Stiff muscles with spasms
  • Numbness, tingling or pain in the arms, legs, face or torso
  • Difficulty with balance
  • Dizziness
  • Urinary problems

Some symptoms of MS can develop later and include:

  • Feeling fatigued, both physically and mentally (this can happen with early symptoms when an MS attack is coming on)
  • Changes in mood
  • Trouble concentrating, learning difficulties or memory concerns

Is race a risk factor for MS?

MS traditionally has been a health condition that affects white people of European background. People who are of Hispanic and Asian backgrounds are far less likely to get MS than white people of European background.

But recently, scientists have seen an increase in MS in Black people. In fact, there are probably more Black people, particularly Black women, who have MS than we previously thought. MS might also affect Black people differently than white people, but scientists don’t have an answer why. Environmental and social factors such as health disparities might be a reason, as well as the fact that Black people aren’t included in clinical studies as often as white people.

Why is it so difficult to get an MS diagnosis?

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There is no specific test to diagnose MS. Instead, healthcare providers (HCPs) use a variety of different tests to come up with a diagnosis. Tests for MS might include:

  • Blood tests
  • A spinal tap, which takes a sample of fluid from your spinal cord to check for antibodies linked to MS
  • Magnetic resonance imaging (MRI) to find any areas of MS, known as lesions, on your brain or spinal cord
  • Evoked potential tests that record the electrical signals your nervous system sends when responding to stimuli

It can be challenging to get a diagnosis, especially if you have uncommon symptoms or your MS has progressed. Your symptoms might be vague, or they could be similar to other health conditions, such as systemic lupus erythematosus.

Who might be a part of your MS care team?

You don’t have to face MS alone. When you have MS, your care team may be made up of many different HCPs, such as:

  • Your primary care provider
  • A neurologist, or a doctor who specializes in the nervous system
  • A mental health provider to help manage the mental and emotional side effects of MS
  • Physical or occupational therapists to help with exercises and managing daily activities
  • Nurses to help coordinate your care
  • Other specialists who help treat symptoms of MS, such as eye care providers or urologists who help manage urinary symptoms

Read: Beyond the Physical. How MS Affects Your Life >>

How do you treat MS?

There are several different treatments for MS. Some MS treatments work to slow the progress of the disease, which is also called “modifying the disease course.” Others work to stop attacks (also called exacerbations or relapses).

Treatments to slow the progress of MS can come in several different forms, including:

  • Injectable treatments
  • Oral treatments
  • Infusions

Treatments to stop MS attacks or relapses include:

  • Corticosteroids
  • Plasma exchange
  • A highly purified form of adrenocorticotropic hormone (ACTH)

You can also use medicines to manage specific symptoms, like bladder problems, fatigue or pain.

What happens if MS goes untreated?

There is no cure for MS. But if you don’t receive treatment, you may not recover as quickly from attacks, and your symptoms might be difficult to manage. Not treating MS can also speed up the damage to your nervous system.

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Without treatment, people who have relapsing-remitting MS can develop secondary progressive MS, according to a 2019 study. Secondary progressive MS is the stage after relapsing-remitting MS. Here, symptoms worsen and you tend not to fully recover into remission after the flare is over.

If you’re living with MS, it’s important to advocate for yourself in order to manage your symptoms. Keep in close touch with your HCP to let them know how you’re feeling and how your treatments are working. Make sure you’re asking questions so you feel fully informed about your diagnosis.

This educational resource was created with support from Novartis.

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Risa Kerslake, R.N.

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Risa Kerslake, R.N.

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