MS Patients on How They Would Improve Care, Diagnosis
BMultiple sclerosis is nerve damage. This can happen anywhere in the body. That makes each patient’s journey unique, and can prompt challenges on both sides of the exam table.
Here’s what eight patients with the disease wish doctors knew when it comes to helping them manage the condition more effectively.
The diagnosis should always be made. Make an appointment
Although Dr. Claire Warren—a 70-year-old Stonington, N.Y.–based physician—has plenty of experience treating patients with all kinds of ailments, it wasn’t until she was diagnosed with MS that she truly understood what it felt like to be diagnosed with a chronic condition. MS can be a brain disease or spinal cord condition that causes vision problems, weakness, and balance issues.
“Honestly, I was a hot mess,” she says. “By the time I went, I had numerous symptoms, but I was in denial about the fatigue, numbness, and increasing mobility concerns. Then, even when I had an answer about what was going on, I refused to accept the devastation of it.”
After her doctor said, “You have MS,” Warren realized, she didn’t hear anything that followed. That’s true as well for Johnnah Rosano, a 39-year-old Boston resident who says it felt as if her brain shut off as soon as that diagnosis was made. Because this is a life-changing condition, being able to adjust to the news takes time—and it would be beneficial to have one appointment that’s simply about getting the diagnosis and doesn’t also include all the possible treatment options, Warren suggests.
“I think it’s helpful for doctors to know that this is devastating,” she says. “This disease will affect your whole life, and that means you have to adjust mentally, which takes time.”
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It is important to take time explaining Imaging and tests
MS can make it difficult to comprehend the purpose and what each test is supposed to communicate, according to Vickie Hadge (56-year-old Connecticut resident).
Patients may be able to access results through their portals but it is sometimes difficult to understand terms such as Hyperintensities in white matterto learn why we need 10 vials blood.
“Even if you had a printout of what each test is supposed to show, that would help, because this disease often feels overwhelming,” Hadge says. “Clarity and understanding can reduce that feeling, and that’s a big advantage.”
A second aspect that could be beneficial in care, she says, is to simply explain the differences between evaluations and what they might include. Hadge, for example, went to her first functional evaluation without any idea of why, when she was expected, what the result would look like, or how it might impact her treatment. She says that stress and anxiety can worsen MS symptoms and make patients feel helpless.
As an addition to the treatment, grief counseling can be a useful tool.
MS treatment is not complete without mental health. Brittany Quiroz (33), a Corona resident, says that while seeing a professional therapist can be helpful, it is best to focus on the emotional side of MS.
After all, MS diagnosis and progression can involve feeling loss, in terms of both physical function and potential future plans, as well as cognitive challenges. Quiroz believes that being able to feel peace in the disease would make it much easier for management.
“Managing illness like this is a full-time job, and having emotional support should be part of treatment,” she says. “If doctors could have those resources available in advance, so they could share them immediately, that would go a long way toward dealing with the stress of having MS.”
Being able to identify our frustrations can help us feel heard
Much like a condition like lupus, MS can take years to diagnose after symptoms begin, and those symptoms can change over time—sometimes even from month to month. That’s already stressful, but if you feel unheard at a doctor’s appointment, it’s so much worse, says Sonda Rossman, a 51-year-old Detroit resident.
“There are many symptoms that are invisible, like cognitive impairment, fatigue, and sensory issues,” she says. “These don’t show up on lab or imaging tests, so I believe doctors need to rely a little less on what the results say and a little more on what patients are saying. Don’t tell me I’m OK because that’s what the MRI says. I know my body, and I know when it’s not OK.”
Rosano also suggests that a lack in coordination between specialist may cause frustration. For instance, she began experiencing high blood pressure, and her neurologist suggested anxiety medication because “people with MS don’t have high blood pressure.” But she didn’t feel anxious, so she asked to see a cardiologist. He told her it’s common to see blood-pressure issues in those with MS, and prescribed medication that addressed the problem.
“This is just one example of how we often have to talk to one doctor after another, because for many of us, there’s no point person looking at the whole picture,” Rosano says. “So on top of being sick with a disease that usually includes fatigue, we have to be our own health advocates. It’s exhausting, and it can lead people to be reluctant to talk about their symptoms, which is obviously not ideal.”
Talk about diet and lifestyle issues.
Warren believes nutrition is often understudied at medical schools. Warren had to study the subject both before and after she was diagnosed with MS. Her sister, who’s an ER physician, began eating a plant-based diet as a way to reduce dementia risk and encouraged Warren to give it a try for her MS symptoms. She’s been eating that way for seven years now, and she’s seen significant improvements in her “brain fog” and energy levels.
“Even though MS involves inflammation and is an autoimmune disease, not once did a doctor talk to me about what I was eating and whether that might be making symptoms worse,” she says. “There’s a connection between your gut health and your immune system, so it makes sense that improving your diet might help your MS. But I know it’s challenging, because doctors don’t get paid to talk to people about nutrition; it’s not considered a priority. But it really should be.”
Patients are eager to hear about the effects of other lifestyle changes as well, adds Jenna Green, 37, who lives in Mansfield, Mass. This includes lifestyle changes such as sleep patterns, exercise and stress management. It also covers complementary therapies like acupuncture and mindfulness. In general, conversations like these acknowledge that MS affects every aspect of a patient’s life, Green says.
“To live your best life with MS is to factor in everything from what you’re eating to how you’re moving to how you’re managing stress,” she says. “Even small changes can make a huge difference for us, so we want to talk about that. Help us put together a health team that includes not just specialists but also professionals like therapists and dietitians.”
Another major lifestyle habit that’s essential is connecting regularly with others who have MS, says Green. Green says doctors that do some research on the communities they might offer and how patients can access them are a great service for people who have just been diagnosed.
“This can be a very disempowering diagnosis,” Green says. “Connecting with others and having strategies that help us feel more in control of our health can give us back part of what we’ve lost when it comes to confidence in making our own health care decisions.”
We are all extremely well-informed about our conditions.
Rossman’s experience in nearly 30 years since her diagnosis is clear: MS sufferers tend to be current with the latest research. They also connect often regarding symptom management and potential treatments.
“What many people do when they first get diagnosed these days is get online, and we are a very active community of patients—we’re eager to share insights and information,” she says. That means doctors and other health care professionals should consider patients as part of the disease-management team, she says. For example, talking about possible research directions in a field like personalized medicine doesn’t give a false sense of hope; it loops patients into discussions that they want to have.
“We want to feel included in what’s happening with MS on a larger scale, not just with our treatment specifically,” says Rossman. “I think doctors sometimes underestimate the power of a patient community and how that drives advocacy and action for us.”
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We want you to understand the nuances of treating Black patients
According to the National Multiple Sclerosis Society (NMS), more Black people are now living with MS than ever before. Some may experience different symptoms from people of other races. You are also more likely to develop MS faster, have greater mobility, coordination problems, more severe disease, and more frequent relapses.
Despite all that, some physicians may still think MS doesn’t affect Black people, especially Black women, as much as it does, says 38-year-old Atlanta resident Azure Antoinette. She says her mother, father, and sister all have MS. However, it was five years before she received a diagnosis and more severe symptoms.
“Health equity for African Americans in this country is a massive problem, and that can come down to what’s happening to individuals like me,” she adds. “You can’t imagine how invisible you can feel when no one is listening to you, and it’s heartbreaking. What I want is for doctors to hear me, regardless of how I look.”
Another important point for doctors to consider is that many Black patients may have a mistrust of the health care system and medical professionals, says Ashley Ratcliff, 37, who lives in Long Beach, Calif. She says that given the history of what’s taken place in the U.S.—such as the Tuskegee experiment and ongoing disparities in maternal mortality among Black women—it may take time and patience to earn patient trust.
“Please treat us kindly, and be transparent about our prognosis and all options available in our treatment,” Ratcliff says. “Get to know us. We are real people dealing with the trauma of being diagnosed with an incurable illness.”
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