The Ultimate Guide to MS for the Newly Diagnosed


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If you’ve recently received a diagnosis of multiple sclerosis (MS), you may feel overwhelmed, sad, angry, shocked, in disbelief, or even in denial.

At the same time, you may feel relieved to finally make sense of your symptoms. Rest assured that whatever you’re feeling, it’s completely normal, and you won’t have to go through this alone — 2.8 million people worldwide have MS.

“Fear and anxiety after diagnosis can make you want to withdraw or hide,” says clinical psychologist Rosalind Kalb, PhD, vice president of the Professional Resource Center of the National MS Society.

“And while that may be appropriate during those first few days or weeks, it’s reaching out for resources, assistance, and support that will be incredibly valuable, helping you to live a full, meaningful life,” she says.

Healthline recently hosted a roundtable discussion called “The MS Handbook I Wish I’d Had” featuring clinical psychologist Tiffany Taft, PsyD, who specializes in chronic disease, and participants who have MS — David Bexfield, Matthew Cavallo, Fred Joseph, and Lina Light — to learn more about what those who are newly diagnosed need to know.

We spoke with them, as well as other medical professionals, to deliver the critical advice and assurance you need right now.

Processing the news

When you’re first diagnosed, your initial instinct may be to imagine the worst case scenario.

“Be patient and try to stay in the moment versus going down the paths of what-ifs,” says Taft, who is also an assistant research professor at the Northwestern University Feinberg School of Medicine.

“That also means not underestimating your ability to cope. Instead of downplaying the likelihood of possible outcomes, say, ‘Hey, that could happen.’ Leaning into the feared event can help quell anxiety more than just saying, ‘That probably won’t happen,’” she says.

Your next thought might be, “‘How do I navigate all this medical stuff? I have all these medications to take, side effects that sound scary. What is this going to look like? How am I going to fit this into my life?’” Taft says.

Taft suggests arming yourself with information — but not by Googling your symptoms or diving into message boards. “They’re not informative and they can be scary,” she says, particularly early on, when you’re still learning about the condition. That said, both can be good options later on, once you have your bearings.

Instead, when looking for information, go straight to credible medical websites and MS-focused organizations, such as:

  • National MS Society
  • Can Do MS
  • Multiple Sclerosis Foundation
  • Multiple Sclerosis Association of America

Healthline also offers extensive coverage of MS, including Insider’s Guide to Multiple Sclerosis.

What your diagnosis means

Although MS affects everyone differently, there are four basic types of MS.

Clinically isolated syndrome (CIS)

CIS refers to a single episode in which neurological symptoms (like vision problems, numbness, and weakness) last at least 24 hours. It’s usually caused by the loss of myelin (the protective covering of nerve fibers) in the brain, spine, or optic nerve.

If an MRI detects MS-like brain lesions following this CIS episode, there’s a 60 to 80 percent chance of developing MS within the next few years, according to the National MS Society.

If no lesions are detected, there’s a roughly 20 percent chance of developing MS within the next few years.

Relapsing-remitting MS (RRMS)

RRMS is marked by distinct flare-ups of new or increasing neurologic symptoms that may last days, weeks, or months. These symptoms may include:

  • numbness
  • pain
  • loss of balance
  • spasticity
  • vision problems
  • bladder problems
  • fatigue

Between flare-ups, symptoms may stabilize or progress slowly, though some can become permanent.

Roughly 85 percent of initial MS diagnoses are RRMS.

Secondary progressive (SPMS)

Some cases of RRMS transition to SPMS. SPMS is marked by a gradual worsening of symptoms and increased disability. It usually occurs in midlife (40s to 50s).

According to a 2016 study, the rate of this transition has fallen to roughly 18 percent within a median 16.8 years after first diagnosis. Advances in treatment are most likely why.

Primary progressive (PPMS)

PPMS is less common than other types of MS. Roughly 10 to 15 percent of people with MS have this form.

PPMS involves gradual worsening of the disease from the start. Nerve damage causes the main symptoms of PPMS. In turn, this nerve damage causes neurological function to decline more quickly than other types of MS.

But since MS affects everyone differently, how fast PPMS develops and its severity can vary greatly from person to person.

Available treatments

Whichever type of MS you’re newly diagnosed with, your doctor will most likely prescribe a disease-modifying therapy (DMT).

For people with CIS, these medications can be used to help delay the onset of MS.

A DMT won’t manage day-to-day symptoms (there are other drugs for that), but it will help reduce the frequency and severity of relapses that damage the central nervous system and worsen symptoms.

There are more than 25 DMTs, including generics, and they come in three forms: injectables, pills, and intravenous infusions.

The best treatment for you, which you’ll decide together with your healthcare team, will depend on several things.

According to neurologist Patricia K. Coyle, MD, director of the MS Comprehensive Care Center and professor of neurology at Stony Brook Neurosciences Institute, these include:

  • Health factors. Preexisting conditions (such as diabetes or high blood pressure) and disease outlook will affect treatment choices. “With more active disease, the efficacy of DMTs becomes very important,” Coyle says.
  • Lifestyle factors. You and your doctor will also consider whether the DMT fits with your lifestyle, family plans, and expectations. For example: How is the medication administered? How often? How much monitoring will you need? What are the possible side effects, what’s the effectiveness?
  • Health insurance. What does your health insurance cover? Many pharmaceutical companies offer assistance programs too. You may also want to talk with your doctor about possibly taking part in a clinical trial.

You can find extensive information about the current Food and Drug Administration approved DMTs — like indications, potential side effects, and more — on the National MS Society website.

Finding the best treatment

Not every DMT will work for every case of MS, and a DMT that works now may not work later. That’s OK.

“You don’t need to go on a DMT that causes suffering, like headaches, GI distress, or elevated liver enzymes, or one that allows breakthrough disease activity,” Coyle says. “There are so many options now that if it’s not a good fit, you switch. Don’t stick with something that’s not doing the best for you.”

Lina Light, who received her RRMS diagnosis in early 2020, wishes she’d known about all the possible treatments at the outset.

“My doctor told me about only three, so I went on YouTube and watched videos of people describing their treatments,” says Light, who lives in New York City.

She tried three different medications in 1 year before finding the right fit.

“It can be scary to stand up to your doctor,” she says, “but you need to be able to advocate for yourself.”

Light has since switched doctors.

Building a support network

The bedrock of your support network is a doctor you trust and feel comfortable with.

“There should be a strong relationship between you and your doctor — communication is key,” Coyle says. “Shared decision making isn’t just about your DMT but also symptom management, lifestyle choices, things like whether to take the COVID-19 vaccination.”

It can also be helpful to confide in a small circle of family members and friends. “You need people in your court who will provide emotional support while you deal with this new diagnosis,” Kalb says.

Some of the best support may come from people who are in the same boat as you.

“Find someone with MS that you can really open up to, that you can share the nitty-gritty of MS with,” Taft says. She herself has lived with Crohn’s disease since 2002 and says, “I have a friend with Crohn’s, and I tell her things I don’t even tell my husband.”

Light has connected with hundreds of people with MS on Instagram after searching the hashtag #MS and following @MSSociety. “On social media, I’ve been able to find people sharing their experience directly,” she says.

For more information, support, and guidance, check out these online resources for people with MS.

Online support groups and community pages

  • My MSAA Community, the Multiple Sclerosis Association of America’s community page
  • National MS Society Community Facebook page
  • Local support group directory from the National MS Society
  • Healthline’s Living with Multiple Sclerosis Facebook page
  • MS Healthline app, which is available for iPhone and Android

Mental health counseling

  • American Psychological Association
  • Anxiety & Depression Association of America
  • National MS Society Counseling Services
  • National Register of Health Service Psychologists

Helplines

  • MSFriends, the National MS Society’s peer-to-peer connection program
  • MS Navigator, the National MS Society’s team of social workers who can answer questions, send information, and provide emotional support

Managing emotional well-being

You’re going to have a lot of feelings, including grief — over losses of ability, activities you once enjoyed, and possibly your idea of who you used to be.

Let those feelings happen. “If you try to push away emotions, they’ll just come out in other ways,” Taft says.

Light has found it helpful to “feel your feelings,” she says. “You don’t have to explain yourself to anybody.”

Find ways to process those emotions. Taft recommends journaling — which, she says, may be as effective as seeing a therapist in some cases — and meditation, using apps such as Calm, Stop Rethink, and Budify.

Do keep an eye out for depression, which is common in MS. If you’re concerned — or simply feel like it would help to talk with a professional — ask your doctor if they can recommend someone who is trained to work with people with chronic conditions.

Being adaptable and flexible has been a secret weapon, emotionally and otherwise, for David Bexfield of New Mexico. He received his MS diagnosis in 2006.

“Be prepared to adapt and make small changes again and again,” he says, explaining how he went from riding a bike to riding a trike to using a hand cycle as his MS progressed.

Navigating relationships

If you have a partner, it’s helpful to recognize that this is a shared experience.

As Kalb notes, MS is not a “me” disease but a “we” disease. Bexfield says that when he struggles, his wife struggles, too.

“Your partner may feel selfish wanting support,” Kalb says, “but they need it.”

When dating, it’s up to you whether or not to disclose your MS, but you may want to hold off.

Frederick Joseph of Long Island City, New York, who received his MS diagnosis in 2012, shared his diagnosis with a woman on their first date. After he went to the restroom, he came back to find her gone.

The idea isn’t to keep secrets, but to wait until you’ve decided that this person is worth your time and energy.

Who knows? You might be pleasantly surprised, as Light was when she shared her diagnosis with her boyfriend, shortly after they started dating. He immediately became her strongest supporter.

When it comes to telling friends and acquaintances, don’t be surprised to hear people say dumb things sometimes.

Joseph has heard, “My Uncle Vince had MS — he died.” Light often hears, “You wouldn’t know it, you look fine.”

Some friends may simply not reach out because they don’t know what to say or are afraid of saying the wrong thing.

“Be ready to teach and explain,” Kalb says. “You might say, ‘MS is different for everyone. If you’re interested, I can tell you what mine is like.’”

If you find you’re unable to keep social plans, be ready with a plan B, Kalb suggests. You might say, “I’m looking forward to seeing you, but I’m totally used up. Would you mind if we skip the movie and just order pizza instead?”

Matt Cavallo of Chandler, Arizona, who received his MS diagnosis in 2004, says, “People stop calling when they’ve heard ‘no’ too many times. I wish I had explained why.”

Complementary therapies and self-care

When it comes to things like acupuncture, massage, meditation, or supplements, none have been definitively proven to help with MS. But each of these things may offer certain benefits, and staying healthy and feeling good also helps your MS.

“Prioritize wellness — especially not smoking and [getting] regular exercise, because it will help the brain age better, repair better, and manage disease better,” Coyle says.

If you don’t take care of yourself, you may also develop other conditions, such as high blood pressure, obesity, or depression.

It’s very important to treat and manage those conditions because, as Coyle explains, “they can damage the nervous system and compound your inability to age well.”

Joseph does acupuncture, meditation, and yoga regularly. “You have to take utmost care of your body — it puts you in a centered place,” he says. “I try to work out every day, but if I can’t do that, I’ll meditate, and if I can’t do that, I’ll rest.”

Bexfield swears by his daily workouts. “It’s a big release of stress, mentally and emotionally,” he says. “It’s too easy to feel old and disabled. I may need a lot of assistance, but I still exercise. Don’t let your disability keep you from doing stuff.”

Maintaining independence

The day Bexfield and his wife made their last mortgage payment, his wife suggested moving.

At first Bexfield balked — “We just paid off the house!” — but his wife insisted they move to an accessible home. Five years later, he’s using a wheelchair and so grateful for her foresight.

However your MS progresses, “mobility is the answer to disability,” Randall Schapiro, MD, retired clinical professor of neurology, once famously said. “When you can’t do things, you figure out a way to keep doing them.”

That means using tools, adaptive strategies, and mobility aids as a way of taking charge of your MS, rather than seeing their use as “giving in” to the disease.

For example, if you have fatigue but you really want to take your kids to the zoo, don’t be reluctant to use a motorized scooter for the day. “Use whatever you need to use so your life can be full, active, and fun, even if you have some limitations,” Kalb says.

Your professional life 

When — or if — you decide to share your diagnosis with your employer will depend on a few different factors.

If you’ve worked for the company or the same manager for several years and have a good relationship with them, it may make sense to tell them sooner rather than later.

But if you’re relatively new to the job or have a complicated relationship with your manager, and don’t have any visible symptoms, it may be best to consider keeping your diagnosis private for now.

It’s important to keep in mind that the Americans with Disabilities Act was put in place to protect those with disabilities from discrimination in several areas, including employment — and it covers the rights of employees as well as job seekers. If at any time you feel like you may be experiencing workplace discrimination related to your MS, you can learn more about filing a discrimination complaint at ADA.gov.

Accommodations and modifications

The time to disclose to your employer about your MS is if you find that you need an accommodation — a parking space closer to your building or a flexible work schedule, for example.

If you’re nervous about asking, you can frame it as a positive for the company. You might say, “I have a chronic condition. If I can have this minor accommodation, I will be as effective and productive an employee as possible.”

At some point, you may want to make other types of modifications so that you can be more comfortable.

Before his diagnosis, Joseph had a high-stress job in marketing. “I was flying all around the country, I was in meetings, and the 9-to-5 career became extremely difficult,” he says. Today he’s an author of a New York Times bestseller, and he sets his own hours.

One tip Joseph offers: Build a buffer into your schedule. Whereas before he might have promised an editor he could turn around an assignment in a day, now he’ll give himself a week, so if there are days he’s too tired to work, he can still meet his deadlines.

Financial planning

Because MS is unpredictable, it’s important to build as many safety nets as you can, including scheduling a baseline conversation with a financial planner.

One helpful resource is the National MS Society’s Financial Education Partners Program. It offers information, resources, and free consultations.

Thinking ahead is positive and proactive, Kalb says: “If you plan for the unpredictable, you’ll feel more secure in how you would handle it, in case it does happen down the road.”

The takeaway

Receiving an MS diagnosis can be a lot to process, and your life will undoubtedly change. “You might lose some things, but you might also gain some things you weren’t expecting,” Taft says.

“Live in the present,” she advises, “recognizing that you can do a lot more with this than you think. You can be flexible, you can be resilient. Don’t sell yourself short on what you can handle.”


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