Building a strong health care team begins with YOU as you recruit team members with the skills and expertise to function in a coordinated way to provide you with the best care. As you work in active partnership with your team members — doctors, nurses, therapists, pharmacists, and office staff — it will become easier to identify quality care and to be empowered to communicate your needs, questions, concerns, and personal choices.
Primary care team
As a person living with multiple sclerosis (MS), it’s often easy to think of your neurologist as your primary, or most important, physician. However, you continue to need access to a primary care physician (PCP) who can take a big picture view of your health, while being available for urgent, acute, and chronic needs. For example, you would call your PCP if you suspected a urinary tract infection so that you could be quickly tested and prescribed treatment. Or if you have chronic conditions, such as hypothyroidism or high cholesterol, it is your PCP who monitors your health with routine laboratory testing and prescribes medication to treatment the condition.
Protecting vision and dental health are important goals of primary care as well. Everybody needs to have a dentist and dental hygienist on their team to protect their periodontal health. People with MS also need an ophthalmologist, optometrist, and/or neuro-ophthalmologist on their primary care team. Annual eye exams are vital to protecting the health of your eyes and vision, particularly if you have MS. Optic neuritis is a common initial symptom of MS that leads to diagnosis for some people. Simple and painless tests available in the office allow your eye doctor to monitor the health of your optic nerves.
Specialty care team
Naturally, your neurologist will be at the center of your neurology team, but not all neurologists are created equal. A neurologist who specializes in MS is most likely to be up-to-date on the latest guidelines and options regarding MS diagnosis and treatment. The field of MS is evolving quickly, and researchers are constantly learning new things about the disease. It’s good to ask your neurologist how he/she stays informed on the latest science discoveries — and don’t be afraid to get a second or third option when it comes to your care.
Like neurologists, nurses can specialize in MS. I am fortunate to attend a larger neurology clinic that employs a MS-certified nurse practitioner who functions as my first line of defense. She is the one I call on when I suspect a relapse; she writes orders for blood work, MRIs, or physical therapy; and she prescribes symptomatic treatment and arranges for IV steroids when needed. My MS nurse is the primary educator in the office and takes the time to discuss my concerns and answer any questions I have.
Other specialists you may recruit to your health care team as needed include a neuro-physical therapist, urologist, speech therapist, or neuropsychologist. Each of these providers work with MS patients to address very specific needs. You can search the American Physical Therapy Association database to find a PT in your area who specializes in neurological conditions. Your neurologist will help you know when it’s time to consult a urologist or speech therapist. When it comes to evaluating cognitive function, the neuropsychologist is your greatest asset.
Additional members of your health care team may include a psychologist, therapist, or licensed clinical social worker (LCSW). Each of these health care professionals are trained to help you develop effective and creative ways to cope with and overcome a variety of challenges. They can also help you find services available in your community.
The MS community can become an important “member” of your health care team as well. MS support groups and advocacy organizations provide resources in education, services, and support to help those who are newly diagnosed and those who have lived with MS for many years. Giving and receiving support from peers and colleagues is an important part of managing this disease. Attending in-person events offers one type of connection, while reaching out to the global online community offers another; both are invaluable.
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Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.