What’s one of the most common feelings when a person is first diagnosed with multiple sclerosis (MS)? Shock. Because MS is typically diagnosed in people between the ages of 20 and 40, oftentimes, it’s the first serious medical issue they’ve ever had to confront.
“It’s a pretty anxiety-producing time for them,” explains Meghan Garabedian, CRNP, MSN. As a nurse practitioner with the MS Center at Penn Medicine, Meghan sees this shock and anxiety in many newly diagnosed patients.
“They don’t know what to do next or whether they should continue with their normal activities in daily living,” she says. “Should they change their diet, exercise, and lifestyle to improve their symptoms? When should they call the medical team about new symptoms?”
Figuring all of this out can seem daunting. But, with the help of healthcare providers like Meghan, MS patients can learn to navigate their new reality more smoothly.
Six steps
Here are 6 steps for you or your loved one to take after being diagnosed with MS.
Include your support system in your care
Having a support system of friends and family members is an important part of MS care. Support can be as simple as just having someone to talk to about your diagnosis.
Meghan also encourages her patients to bring someone from that support system with them to their appointments. “It’s nice to have an advocate and someone who can provide a different perspective,” she says.
For instance, MS can cause problems with coordination and balance. A family member or other support person might notice instances of these problems during a patient’s daily life that he or she feels are worth mentioning to the medical team.
A member of the support system can also take notes during appointments to ensure that important information isn’t forgotten unintentionally.
Talk to a social worker
A social worker can assist with a myriad of needs—such as paperwork for the Family and Medical Leave Act (FMLA), in case you need days off of work for tests or appointments.
“We have a social worker here at the MS Center who can help with that,” Meghan adds. Social workers can also help with financial and insurance issues to make sure there are no delays in receiving care or medications because of cost or approval problems.
Stay on top of your follow-up appointments and tests
Meghan says many newly diagnosed patients are concerned that they’ll end up in a wheelchair or be completely dependent on other people for daily living. But, she says, everyone’s MS experience is different.
Staying on top of your appointments can make a huge difference. “It’s important to go to follow-up appointments as you’ve been advised by your care team,” explains Meghan. “Also be sure to get any necessary testing—like MRIs—as asked.”
Take your medications
Be sure to take your medications as ordered by the medical team.
“It’s important to understand that certain medications known as disease-modifying therapies are not necessarily going to make the symptoms go away completely. The goal is to prevent disease progression and new neurological symptoms,” says Meghan.
So while you might not feel better in the short term, taking your medications as they’ve been prescribed can help in the long run.
However, Meghan adds, “If you have new symptoms or side effects of the medications, let your care team know what’s going on.”
Let your medical team know about new symptoms
Sometimes, it can be difficult to tell which symptoms are MS related and which aren’t. As Meghan explains, “If you lean on your elbow for an extended period of time, it might turn numb for a bit. But that isn’t necessarily a symptom of MS.”
However, she adds, “Let your medical team know if you have new symptoms that last more than 24 to 48 hours—such as weakness in your extremities, numbness, tingling, or changes in vision.”
Take care of your mental health, too
“Diagnosis is usually a time when many patients need support from a counselor or other mental health professional—especially if they’re anxious or depressed,” says Meghan.
“I want patients to understand that all of the emotions they’re feeling are to be expected. But they’re not alone. We have so many different resources available to them so that they can understand and cope with this diagnosis.”
Penn Medicine’s MS Center provides comprehensive care to patients, from diagnosis through treatment and symptom management.