Managing Multiple Sclerosis In Minority Populations

By Kate Johnson

For Flavia Nelson, MD, professor of neurology and director of the multiple sclerosis division at the University of Minnesota, Minneapolis, the biggest challenge about managing MS in minority populations is awareness.

Patients often feel like they don’t matter as much…

Born in Mexico City, where she completed her medical school, she did her residency at the University of Texas Health Science Center in Houston where she first encountered Hispanic MS patients as a ‘minority’ population. She was struck by the time it took to diagnose such patients from the first onset of symptoms. Unfortunately, regardless of ethnic or racial background, the first transient, vague symptoms of MS – such as numbness or tingling – are often dismissed by both patients and physicians. In the context of minority populations, however, the period of unrecognized MS may stretch longer.

“I would say it’s probably related to minorities’ fear and lack of trust in the system,” she said in an interview. “Minority patients often feel like they don’t matter as much – like doctors may not pay as much attention to them when they complain, and they may be dismissed.

Dr. Flavia Nelson
“I’ve had really smart patients who, if they’re told they are fine, will go and Google things and self-diagnose, but people with a lower level of education or less access to Internet are not going to question the doctor. In many cultures the physician is almost like a priest, an authority, so they’ll make tea with some herbs or find another homemade remedy.”

As a result, a firm diagnosis of MS is often delayed until patients end up with “something more dramatic,” such as loss of vision in one eye, severe dizziness that prevents them from walking, or severe numbness and weakness from the waist down. “Anything suggesting transverse myelitis, optic neuritis, or a brain stem syndrome that gives dizziness and double vision – those are the main three that bring people to the ER, and those we don’t miss,” she said. But often, careful questioning will reveal a history of earlier warning signs. “Only a physician who is willing to go back and ask, ‘have you ever had any neurological symptoms that came and went, and nobody figured out what it was, or you didn’t think anything of it’ will get the history, and I am seeing a lot of that here in Minnesota.”

Moving from Houston to Minneapolis Dr. Nelson noticed a dramatic difference in MS awareness among providers, despite Minneapolis having the second-highest rate of MS in the United States. Working with the National MS Society Access to Healthcare Committee, she reached out to rural family practitioners and ED physicians about early signs of MS. “They are the gatekeepers and a lot of times, even if patients go to a doctor, they end up not being referred to a neurologist or sent for an MRI and this happens more with the minority populations,” she said.

Even if they are referred, patients from minority populations may need more help digesting the initial MS diagnosis, and this can take many different forms depending on their racial or ethnic background.

“In Minnesota we have a large Somali population with MS. They know how to access the health care system but there’s a stigma about disease,” she said. “The Eastern European population is also very tough, very stoic, and they don’t want anyone to know about it, especially not mom, whereas in the Arabic or Hispanic communities the whole family shows up for the appointment.”

Understanding a patients’ beliefs and cultural traditions is key to successfully treating them, she added. “When you have people with different levels of education, and insight, and maybe high levels of fear you have to be very patient with them, and that trust is what enables you to make a connection and helps them understand you really are trying to do what’s best for them. I ask them ‘do you believe in God? Yes? Okay, then pray … but you also have to do your part.’ A lot of times you have to go that route and talk about God or their families.”

But gaining a patient’s trust is time-consuming – particularly if there is also a language barrier – and patients who rely on translators deserve extra time to ensure there are no misunderstandings. “You would be surprised how little they understand about what you said, so I ask them to tell the translator to repeat my main points and I send them home with written notes about their diagnosis.”

Top image credit: FatCamera/E+/Getty Images
Image credit: FatCamera/iStock/Getty Images Plus

With all patients, regardless of their racial or ethnic background, Dr. Nelson is careful about information overload. She recommends dedicating a follow-up appointment after discussing the diagnosis for discussions about treatment and management.

Alternative treatment is a popular topic with many patients, whether they are from minority populations or not, and Dr. Nelson is quick to outline her position on it. “It’s all okay with me as long as I know about it and as long as they do it in addition to what I am recommending,” she said. “The one thing I tell them is ‘please don’t tell me you’re going to do only alternative medicine, because I can’t be your doctor if you go that route. I tell them: ‘There is no diet or acupuncture or prayer that is going to make this go away; I do believe in miracles, but you have to do your part too.’”

While most herbs and supplements, as well as chiropractic of acupuncture treatments, are not harmful, she warns against some fads such as bee sting therapy, removal of mercury dental fillings, or stem cell transplants. Her center is part of a large U.S. multicenter stem cell transplant study which should provide the final word on that approach.

While Dr. Nelson’s academic expertise is in MS imaging, she is passionately dedicated to patient education and has traveled all over the country giving patient education sessions in Spanish. “The time you spend educating patients – that’s time well spent, and I will do it again and again. I’m not getting as many invitations to do patient programs as I used to, but if I get them, I do them.”

She said one of the advantages of working in an academic setting is that she has more time for her own patients. “It makes a huge difference – I hear that from them all the time. For them, having a good doctor means being heard – so I just sit and talk to them, listen to their concerns, and sometimes there’s nothing I can do for them because they’re in a wheelchair – but just sitting and talking – it makes a difference.”


Update: MS in Minority Populations
Don’t forget social determinants of health in minority MS patients