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A beginner’s guide to multiple sclerosis
When it comes to MS, time is of the essence. The sooner you recognize the symptoms and get treatment, the better your quality of life can potentially be.
In October 2018, actress Selma Blair announced to the world that she had been diagnosed with multiple sclerosis (MS). Awareness around this incurable condition soared.
In an Instagram post, the Legally Blonde costar shared: “I fall sometimes. I drop things. My memory is foggy. And my left side is asking for directions from a broken gps. But we are doing it ... I am in the thick of it but I hope to give some hope to others. And even to myself ... I have MS and I am ok.”
Blair is just one of many on this journey. According to the National Multiple Sclerosis Society, an estimated 1 million Americans are living with MS. It’s an immune disease that affects the spinal cord, brain and optic nerve. With MS, your body attacks the coating around nerves that helps the nerves communicate with each other.
While MS can affect people of any age, it usually begins between the ages of 20 and 40. And it’s more often diagnosed in women than men, according to the National Library of Medicine.
The fortunate news: Our understanding of MS has come a long way. “We are so much better at treating MS today, with better and more powerful medications,” says Barry A. Hendin, MD. He’s a neurologist in Phoenix and chief medical officer of the Multiple Sclerosis Association of America. “I want patients to be reassured that the goal is for them to live as free of disease as possible — and that’s not unrealistic.”
Still, an MS diagnosis can be scary. Here’s the information you need to help raise awareness and fight back.
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The signs and symptoms of MS
This disease is complex, and people who have it don’t all experience it the same way. Some symptoms may be mild, while others are severe. And worse yet, they can change unpredictably over time.
That said, there are 3 symptoms that are often an early sign of MS:
- Eyesight changes. You may also experience blurred or double vision, a hard time telling the colors red and green apart, or have blindness in 1 eye. Sometimes people describe their blurred vision as feeling like a cotton ball has been spread out across their eye, says Julie Fiol. She’s the associate vice president of health care access for the National Multiple Sclerosis Society.
- Dysesthesia. Known as an “MS hug,” this can feel like an uncomfortable or painful tightness around your stomach or chest. Fiol adds that it can increase your sensitivity to touch so much that certain items of clothing, particularly a bra, can be painful to wear.
- Numbness or tingling. This sensation can occur on the face, body or arms and legs.
According to the National Multiple Sclerosis Society, some of the other common symptoms are:
- Walking difficulties
- Involuntary muscle spasms
- Changes in memory or focus
- Vertigo and dizziness
Nearly one-third of patients may experience depression, too. This is according to a large review published in the Journal of the Neurological Sciences.
Less common symptoms may include slurred speech, difficulty swallowing and breathing problems. A combination of nerve damage and weakening of the muscles is behind many of these complications.
Related reading: A beginner’s guide to vertigo.
Blair reports that she had MS symptoms for at least 15 years before her diagnosis and that she was “relieved” to finally have an answer. So if you recognize the above symptoms as something you’re experiencing, don’t hesitate to contact your doctor.
It may be best to start with your primary care provider (PCP). Researchers found that people who connected with their PCP first and were then referred to a neurologist (who will make an MS diagnosis) were just as quickly diagnosed as those who went straight to a neurologist. That’s according to a 2019 study in the Multiple Sclerosis Journal.
That’s important. At first, you may not know what your symptoms mean. Your PCP can advise you about where to go to get the most effective help.
The study also found that certain symptoms, such as slurred speech, got people to go to the doctor faster, compared with gait issues or depression, which can be attributed to other causes. Your PCP can be your partner here. You’re not alone in trying to figure out what your symptoms mean.
For instance, fatigue might not make you think of MS. There are so many reasons someone may feel exhausted. But Fiol points to a 2021 study in Neurology that found that 52% of patients said they had fatigue before being diagnosed. “Many people find it to be the symptom that has the greatest impact on their daily functioning,” she says.
How MS is diagnosed
There is no single test that can diagnose MS. And there are many possible causes of neurological symptoms such as the ones outlined above. So if your doctor suspects MS, they’ll first work to rule out all other possible culprits.
According to the National Multiple Sclerosis Society, this could include reviewing your medical history, past and present symptoms, and a neurologic exam. This exam may include things such as testing your reflexes, strength, coordination and balance.
Further tests may be needed to find signs of damage to your central nervous system and confirm that MS is the cause. These may include magnetic resonance imaging (MRI), spinal fluid analysis or blood tests.
The treatment options for MS
MS is progressive, but the course of the disease doesn’t look the same for each patient. “We don’t exactly know why each person with MS is affected so differently, and this is a huge area of research,” says Fiol.
One thing is certain: “Early, effective therapy means a lesser likelihood of early disability or disability in general and a greater likelihood that you can maintain your [current] abilities and be able to live an active life,” says Dr. Hendin.
Early MS is often more inflammatory in nature, explains Fiol. That means your doctor may talk to you about medications that treat flare-ups or prevent future ones from happening. (These are also called relapses.) Treating these can help slow the progression of the disease.
Some of the medication options that can help treat relapses and modify the course of the disease include:
- Corticosteroids. Short courses of these inflammation fighters can help bring the relapse to an end more quickly, according to the National Multiple Sclerosis Society.
- Interferon beta medications. Your body makes interferons, a type of protein that controls the activity of the immune system. Man-made versions can reduce (and might prevent) the inflammation that damages nerves in MS.
- Monoclonal antibody treatments. These medications are given as intravenous infusions. They alter specific immune cells that contribute to nerve damage in MS. This helps reduce relapses and helps keep the disease in check.
Other medications can also help you manage symptoms. For example, if you have pain that interferes with everyday life, your doctor may consider prescribing a medication such as Cymbalta® (duloxetine) or Lyrica® (pregabalin). If you have bladder problems, a medication such as Flomax® (tamsulosin) may help.
Each medication comes with its own risks and benefits, and one may be better suited to you depending on your own symptoms and treatment goals. The best thing to do is discuss this subject in depth with your doctor before deciding on a therapy.
While medications are effective, “they won’t be enough by themselves,” says Dr. Hendin. Your doctor may talk to you about lifestyle changes and wellness strategies that can help you manage your symptoms. This could include quitting smoking (it may make the disease worse) and doing exercises that can help you stay strong.
Symptom-specific approaches can help improve your quality of life, too. For example, if you’re having problems walking, your doctor may refer you to a physical therapist. If you’re struggling with anxiety or depression, talking to a therapist can help. (Wondering what therapy is all about? Here’s what you need to know.)
There is no cure for MS. But you can still live a full and rich life. The goal after a diagnosis, Fiol says, is to prevent it from derailing your life’s plans — whether that includes starting a family, running a marathon or excelling in your career. Know that you have the strength of the MS community behind you, cheering you on every step of the way.
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How many people live with MS: National Multiple Sclerosis Society
Who gets MS: National Library of Medicine
The symptoms of MS: National Multiple Sclerosis Society
Study on depression and MS: Journal of the Neurological Sciences (2017). “Prevalence of depression and anxiety in Multiple Sclerosis: A systematic review and meta-analysis"
Study on the speed of diagnosis when going to a PCP or a neurologist: Multiple Sclerosis Journal (2019). “How do patients enter the healthcare system after the first onset of multiple sclerosis symptoms? The influence of setting and physician specialty on speed of diagnosis”
Study on fatigue and MS: Neurology (2021). “A real-world study characterizing symptoms and impacts of fatigue in US adults with relapsing multiple sclerosis using a novel disease specific scale”