Just Diagnosed with MS? Answers to 7 Common Questions
Receiving a multiple sclerosis (MS) diagnosis can bring on a variety of emotions—it can be a relief to have an explanation for your symptoms, but you may also feel shock, anger, fear, or even denial. You may grieve for your life before the diagnosis and the loss of your perception of yourself as healthy. And you’ll likely have a lot of questions about your MS diagnosis.
Of course, you’ll likely want to ask your doctor many specific questions you may have, but there are some common questions about MS that we can help you with. Knowing the answers can help you get a better understanding of the disease and how to manage it, which in turn, may help lessen anxiety over the unknown.
1. What Happens with MS?
Simply put, multiple sclerosis occurs when the immune system misfires and launches an attack on the neurons of the central nervous system, which includes your brain, spinal cord, and optic nerves. This leads to inflammation that damages myelin, the protective layer that surrounds the cables (called axons) connecting one neuron to another.
Myelin is kind of like the rubber insulation around the wire of a phone charger cord, says Lindsay Ross, M.D., a board-certified neurologist and MS specialist at the Cleveland Clinic, in Ohio. “In MS, what happens is that the insulation of that protective coating is damaged, and that interferes with the body’s ability to send and receive electrical signals, which causes the signs and symptoms that people experience in MS.”
Which symptoms a person experiences will depend on which part of the central nervous system is affected. So, most people with MS have their own pattern of attacks and resulting symptoms.
However, there are some common ways MS is experienced. For example, in relapsing-remitting MS (RRMS), the disease has a cyclical nature: Attacks of symptoms (relapses) are typically followed by periods of relative improvement (remission) and then relapse again. In secondary progressive MS (SPMS) and primary progressive MS (PPMS), the disease steadily progresses without relapses or remission.
2. Why Me? Why Did I Get MS?
The exact cause of multiple sclerosis is unknown, though researchers are working diligently to learn more about MS and hope someday to find a cure. “There may be a small genetic predisposition and several possible environmental triggers: low vitamin D, northern geography, infectious mononucleosis, among others,” says Hesham Abboud, M.D., board-certified neurologist and director of the Multiple Sclerosis and Neuroimmunology Program at University Hospitals Cleveland Medical Center, in Ohio.
“It's not something you did,” Ross says. “It's not your fault that you’ve ended up with this disease.”
And if you’ve been diagnosed with multiple sclerosis, you’re not alone—according to the most recent estimates, approximately 1 million people in the United States have been diagnosed with MS. “While you might not know someone [who has it] or haven’t heard much about it before, you’re far from alone,” Ross adds. And even though we’re still learning about MS, there is hope. “Receiving an MS diagnosis is not the end of the world,” says Bardia Nourbakhsh, M.D., board-certified neurologist and assistant professor of neurology at Johns Hopkins School of Medicine, in Baltimore. “There are many treatments available for people with MS. And most people actually live a long life. … It's not as bad as many people assume it is.”
While you’ll likely need to make adjustments, which can feel quite devastating, it’s important to know that many people diagnosed with MS lead full, productive lives. Some people even find silver linings, such as that living with the disease makes them more compassionate or inspires them to spend more time on meaningful pursuits or with their families.
3. How Do I Know Which MS Treatment Is Best for Me?
Early treatment is key to slowing the disease course and reducing odds of disability. The variety of treatments for MS typically fall into two categories: disease-modifying drugs and medications to address specific symptoms.
Because no two people with MS experience the disease the same way, the right treatment or combination of treatments will be based on what you’re dealing with—and that may change over time. Working with your doctor is the best way to establish and maintain the right treatment plan for you.
Abboud explains that you and your neurologist will work together to factor in:
- Severity of the disease. Severity is based on your symptoms and the lesion burden seen on an MRI.
- Other medical conditions you have. For example, certain MS medications aren’t suitable for people with uncontrolled diabetes and hypertension.
- Personal preferences. Some people don’t like needles, have trouble taking pills every day, or can’t regularly attend infusion appointments. This is really important when it comes to picking the right treatment, Ross says, “because no treatment is going to be effective if you’re not invested in continuing the treatment plan.”
- Side effect risk. Ask your doctor about the risks associated with the treatments you’re considering. You’ll have to weigh those risks when making your decision.
4. How Do I Know If My Treatment Is Working?
“When you take [disease-modifying] treatments, often you feel nothing. So, it can be hard to know, 'Is this working for me? Is it not working?’” Ross says. “What I tell my patients is that working means that you're not developing new MS symptoms that you've never had before.”
To tell how things are going with your MS, it’s important to follow up with your doctor regularly. “We monitor with scans to make sure that there's not silent disease activity going on in the background,” Ross says.
Doctor visits will probably be more frequent at the beginning of the process, Ross adds: “Early on, we'll typically see someone for a new diagnosis every three to six months for the first year or two, until we get them stable on an effective treatment that they can tolerate. Then, often, we can space it out to every year, or in some cases every two years.”
It can also take time for your treatment to start working and reach its full efficacy—anywhere between three to 16 months, depending on the exact drug you’re prescribed. It may help to think of it as a marathon, not a sprint.
In the meantime, feeling “nothing” is a good thing. “MS disease-modifying therapies are not expected to improve symptoms. They may for some people, but that's not the goal,” Nourbakhsh says. “The purpose of using them is mainly prevention of new lesions, prevention of attacks or relapses, and hopefully prevention of accumulation of disability.” They also prevent disease progression by aggressively managing and preventing attacks early in the disease course.
5. What Other Steps Can I Take to Manage MS?
Managing multiple sclerosis involves so much more than medication. “Disease-modifying therapies are only one aspect of comprehensive management of MS,” Nourbakhsh says.
Making certain lifestyle choices can also help you manage your MS, including:
- Not smoking
- Eating a healthy diet
- Avoiding alcohol
- Exercising regularly
- Maintaining a healthy weight
- Prioritizing sleep
- Getting your vitamin D levels checked and working with your doctor to maintain a healthy level
6. What’s My Outlook with MS?
“It's not your grandmother's MS anymore,” Ross says. “Our patients are no longer destined to end up in a wheelchair, and their life expectancy is near normal.”
That’s mainly thanks to early diagnosis and advances in treatment. “The natural history of the disease has changed for the better because of the development of new, highly active disease-modifying therapy,” Abboud says. “Most people with MS now can expect normal or near-normal quality of life as long as they are treated early in the disease course and as long as they are compliant with their treatment.”
And ongoing research shows promise for the future with MS, as well.
“We're at a point where MS is not going to define your life,” Ross adds. “It might be a part of your life—we're hoping it's going to end up being a small and background part of your life—and those dreams and plans that you had are things that we're still going to work [toward].”
Dan and Jennifer Digmann, who write about life with MS on their blog, A Couple Takes on MS, look back on when they were first diagnosed. “We wish we would have known how powerful we are and how powerful we need to be to live with MS,” they wrote in an email. “The disease is strong, but so are we.”
7. Which Resources Can Help Me Educate Myself About MS?
“There are many different sources of information on the internet, and I imagine many of them are not reliable,” Nourbakhsh says, “meaning they are not based on the best available scientific consensus.”
That said, one of the best sources for researching quality information about MS is the National Multiple Sclerosis Society. We also publish science-backed articles reviewed by medical professionals.
“There is a lot to learn about MS,” the Digmanns add. “But you will have plenty of time to learn about the disease. Give yourself time.”
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