I was lucky to land in the hands of an MS-specialized neurologist from the get-go. This saved me time and ensured that my health was being overseen by a doctor that was familiar with my disease and could guide me accordingly, answer all my questions, and make sure I was on the best disease-modifying therapy possible.
My neurologist, Adnan Subei, DO, medical director of the Multiple Sclerosis Program at the Memorial Neuroscience Institute, is the head of my plan of care. He keeps track of the progression of my multiple sclerosis, testing my walking and arms coordination, checking my eyes, keeping track of my cognitive skills, and ordering my MRIs and meds to manage my different symptoms. He stays informed of all medications, therapies, tests, even mobility devices that are ordered for me by other doctors in my care team, staying connected through the Memorial Regional Hospital MyChart system.
Dr. Subei wasn’t available to come visit me when I was hospitalized, but I was told by the other doctors that he looked at my chart and left a thorough analysis of my case and confirmed my prognosis. I knew right then that I was in the right hands. He clearly understands the full scope of multiple sclerosis, and he stays in the know about new therapies, research, and clinical trials.
Since the beginning, he has always listened to me and addressed all my concerns during each visit. He’s always very accessible, just an email or a phone call away. Most importantly, I’ve never felt like anything has been imposed to me because he hears me out and validates my opinion. I’m part of the decision-making process when it comes to my care, which makes me feel at ease. Dr. Subei has a lot of experience with MS patients, so I trust his judgment with my eyes closed.
When I met him, my body was so weak. He explained to me the ins and outs of multiple sclerosis and what to expect. He showed me all my lesions, in particular that “bad boy” on my cervical spine, responsible for all troubles. Then we discussed the treatment options and proceeded with the authorization process. Throughout the years, he has referred me to doctors specialized in other disciplines that he thought could help me manage my symptoms as they developed.
I don’t mean to boast, but the medical services in Florida are excellent. The health care systems are known for their professional staff members and services. There are several MS-specialized neurologists in different parts of the state and many neurologists that have a vast experience in treating MS patients. We even count with the Mayo Clinic Multiple Sclerosis Program, of solid reputation, in Jacksonville.
Then, there’s my physiatrist, Janice Cohen, MD, from the Physical Medicine and Rehabilitation office at the Memorial Rehabilitation Institute. She’s in charge of thoroughly assessing my physical condition. She evaluates my gait, spasticity, atrophy, etc. Thanks to her, I have all the mobility devices and walking aids I’ve needed throughout the years. Also, she has ordered rounds and rounds of physical and occupational therapy, just so that I can maintain the functions I still have, before MS takes ownership of them.
The incredible knowledge of the human body she has makes me feel very comfortable and reassures me that I’m being well taken care of. She understands to perfection the complexity of all mechanisms and components involved in the movement of every part of the body. Even when we have telehealth appointments, it’s just surreal to me how she understands exactly what I mean when I explain things to her, just because she has this “diagram” in her head of human physiology.
Now, integrative medicine has played a great part in my recovery and healing process – from vitamin supplements and nutrition to exercise and mindfulness. Ashwin Mehta, MD, medical director of integrative medicine at Memorial Healthcare System, had been recently hired when I had my first MS attack that left me bedridden. I call him my “Guru” doctor. I met him for the first time a few weeks after being discharged from the hospital. He taught me so much about how health and food are linked together, how to reduce inflammation, and how to practice self-care.
He’s one of, if not the best, addition to my medical team. I feel like every time I visit with him, I’m back on track and in charge of my health, because he gives me the tools I need to stay on the right path. He’s a great listener, and so knowledgeable. There’s just nothing he doesn’t know the answer to. He’s up to date on alternative therapies and holistic medicine. He has guided me, as I have declined physically, on how to approach exercise from a different angle and still stay active regardless of my limitations. Also, he’s helped me with stress management techniques like meditation and acupuncture.
About a year ago, I switched primary care doctors and met Nga Nguyen, MD. She’s in charge of my overall health, keeping an eye on all my levels: cholesterol and triglycerides, liver enzymes, red blood cells, and lymphocytes count. Managing MS symptoms requires taking strong medications that can affect other organs and cause other medical conditions that we need to avoid at all costs. That’s why doing my annual check-up with Dr. Nguyen is so important. We stay in touch constantly, and in case something comes up, I reach out to her immediately.
Last but not least, the pillars of my recovery, my therapists at the Memorial Rehabilitation Institute. This group has been by my side every step of the way. From day one, they have been there for me. I started with occupational therapy, since I lost the grip on my right hand. Then continued with physical therapy, and so far, it’s been almost 7 years of continuous therapy. I’ve made wonderful friends in this center. They have seen me at my worst, but never gave up on me. Always with a smile and nothing but positive vibes, making me feel that I got this, even when I don’t.
I’ve worked with every single therapist in the rehab center, so at this point it feels like they’re family. Everybody knows me there, and they make me feel most welcomed. I’ll be forever grateful for having these loving, caring, dedicated people in my life. I would’ve never come back from the ashes like I did if it wasn’t for them.
All these wonderful people I’ve mentioned have been crucial in my MS journey. It’s been my privilege to be treated by them and learn from them as well. I’ve become an “expert” at reading my body and identifying potential triggers, anticipating and managing symptoms efficiently, and avoiding putting myself in situations for which I’ll be paying the price later. All, because of them. The advice of each and every single one of them resounds in my head in everything I do.
When we choose our medical team, the people in which hands lies our health, we need to do it wisely. If it doesn’t feel right, it probably isn’t. Sometimes MS deteriorates us faster than we can keep up with and we can’t afford to waste time going in circles. That’s why being your best advocate and having the best team of doctors possible by your side is essential.
The variety of MS symptoms is so broad that it could require seeing more than one specialist at a time. So, a comprehensive care managed by the best of the best, modesty aside, was the only thing I could settle for. All my doctors are part of the Memorial Healthcare System; therefore, they all have access to my medical record, and they can read each other’s notes and add their own as needed. This makes everything easier for me as a patient, keeping everything in one place.
So, who’s who in my health care team? They’re the energy that keeps me going. They’re the strength behind every little battle I win over MS. They’re the force that empowers me. The light in the darkness, the support when my world crumbles.
To connect with other people living with multiple sclerosis join our MS Facebook Support Group.
Photo Credit: Cecilie_Arcurs / E+ via Getty Images
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Mayteé Ramos was diagnosed with relapsing-remitting multiple sclerosis in 2015. She is a support group leader for the National Multiple Sclerosis Society, a member of the Buddy Network for Shift.ms, and has participated in programs such as the “Ask an MS Expert” series and the PBS American Portrait project. She enjoys traveling, watching tennis, collecting jewelry, and spending time with her three sons. Connect with her here.
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