Multiple Sclerosis: From diagnosis to recovery

Mayteé Ramos leads an online English and Spanish support group for people with MS. Ramos, 45, of South Florida, worked as an interpreter before she started having symptoms of MS and was diagnosed in 2015. She is a social media moderator, blogger and the host of MS Positive, a YouTube channel.

One Sunday seven years ago, as I tried to sign the paperwork to buy a car, my fingers froze. I managed to scribble something and didn’t give it another thought. But that week, an intensifying leg pain kept me from riding the elliptical. By Friday, my toes had stopped moving, so I drove myself to the hospital. Then came a battery of tests, paralysis on my right side, memory loss, hospitalization and a diagnosis: multiple sclerosis. I hadn’t heard much about it. No one in my family had had it. But when my children came to visit and I was unable to hold them, I knew my life had changed forever.

After rehab, in which I relearned to brush my teeth, use silverware and get in the car, among other basic skills, I talked the doctors into letting me go home. It was Christmas Eve. I decorated the worst Christmas tree of my life, made a lasagna with one hand and sent my husband out to buy gifts for my three boys. Breaking down crying wasn’t an option. My children needed me, no matter how much pain I felt. I decided that life must go on.
I set out to learn all I could about the disease. Soon, I checked out the National Multiple Sclerosis Society resources online, called them and asked about starting a support group. I formed the Puertorriqueños Unidos por la Esclerosis Múltiple, a virtual group of about 20 members that meets every other Thursday.

Thanks to my work as a medical interpreter, I knew how to tap available resources. But I soon realized that after a diagnosis, many people were lost, unable to ask questions, find a Spanish-speaking doctor, seek help, deal with the insurance company or request funds for mobility aids. I wanted to help them live their best life with MS. Now I use my language skills, Communications degree and experience with MS to guide others on social media.

What is MS?

Multiple sclerosis is an unpredictable disease of the central nervous system that, so far, has no cure. Symptoms vary from one person to another, and may include disabling fatigue, mobility challenges, cognitive changes and vision issues. Some 1 million people in the U.S. live with MS. Early diagnosis and treatment are critical to minimize disability.
Although MS is not as common in Hispanics as in the general population, studies are finding rising rates of MS among us, particularly in first- and second-generation Americans. They also show that more and more people in Latin America have it.
Researchers also notice more impairment that affects mobility, greater disease severity and more rapid progression among us. The reasons are unclear.

What obstacles to care do Hispanics/Latinx face?

I’ve seen it: when everything is in English, those who only speak Spanish may get intimidated, wait months for an appointment, get delayed diagnosis, be unwilling to ask for a second opinion or get vague information from hospital staff. “Go left,” they’re told. And off they go down a hallway, full of questions and fears.The difficulty finding bilingual healthcare, misperceptions about the disease and its symptoms, immigration issues and the feeling of being dismissed may keep us from receiving adequate care.

How can the National Multiple Sclerosis Society help you?

The National MS Society is trying to make us feel welcome by redoubling its outreach efforts. A monthly webinar in Spanish, Pregúntale a un Experto en Esclerosis Múltiple, addresses topics of interest to the MS community, and this September the Society will hold their first Hispanic/Latinx MS Experience Summit. They are also funding research to understand why the disease course often looks different for us, to make sure we have the best possible treatments and to reduce disparities in MS care.

More information and resources are available on the National MS Society website. To reach Spanish-speaking MS Navigators, who can answer your questions, point you to solutions and provide information about support groups like mine, call 1-800-344-4867 or complete a Contact US form.