Navigating The Health-Care System with MS

By Rosalind Kalb, PhD

At the best of times, today’s healthcare system can seem like a confusing maze. With the added pressures of living with a chronic, unpredictable disease like multiple sclerosis (MS), accessing high quality, comprehensive care can feel even more challenging. The best place to start is with a clear understanding of diseases like MS, and the symptoms and challenges it may cause for individuals and their families, as well as familiarity with the types of healthcare providers that can help you manage them.

MS is an immune-mediated disease – most likely autoimmune – in which immune cells mistakenly attack the fatty covering called myelin that surrounds the nerve fibers in the central nervous system (CNS – brain and spinal cord), as well as the nerve fibers themselves. This damage to myelin and nerve fibers causes a disruption in signals between the brain, spinal cord and the rest of the body, which produces the many different types of symptoms seen in MS.

Because the attacks occur randomly within the CNS, no two people’s symptoms are exactly the same and the disease course proceeds differently for each individual. Possible symptoms of MS include changes in physical, emotional and/or cognitive functioning. Common physical symptoms include severe fatigue, problems with mobility caused by weakness, stiffness, poor balance and other factors, vision problems, changes in bladder and bowel functioning, pain, problems with sexual arousal and response, sleep problems and others.

The most common emotional changes include depression, anxiety, and irritability. Cognitive changes may include slowed processing of information as well as problems with attention, learning and memory, spatial relationships, and word-finding. In partnership with Sanofi Genzyme, Can Do Multiple Sclerosis has created a new educational initiative, MS Path 2 Care, with the goal of helping people with MS be active, informed partners in their healthcare experience.

According to program participant Stephanie Buxhoeveden, MSCN, MSN, FNP-BC, who is living with MS, “In my experience, in order to be at your best, you need a healthcare team that is built around your individual needs. That is why it is crucial to understand what resources are available, and how to access them.”

Building Your Healthcare Team

Some people living with MS receive their treatment at MS centers where healthcare providers specializing in MS care work as a team to address all the components of MS management, including management of MS attacks (also called relapses or exacerbations), management of the disease course, symptom management, rehabilitation (including physical therapy, occupational therapy and management of speech, swallowing and cognitive problems), and psychosocial support. Approximately 30 percent of people with MS either get their care at an MS center or are evaluated at a center periodically while continuing to work with a local neurologist. Others, however, need to create their own team of healthcare providers among the professionals in their community.

To assist with this effort, MS Path 2 Care provides a Compass to Care that identifies the members of the healthcare team that can assist you with different aspects of your care, when and if the need arises. The array of providers may seem daunting or even scary, but the good news is that they can partner with you in their care. Your neurologist and the National MS Society (1-800-344-4867) can help you connect with these healthcare providers as the need arises. Let your neurologist know about any new symptoms or other changes you experience so that he or she can determine whether they are MS-related and make the appropriate referral(s).

As you look at the Compass to Care, you’ll notice that your primary care provider (PCP) is a key member of your core team. In addition to managing your MS, it is essential to continue paying attention to your overall health and wellness. People with MS often have other health conditions (referred to as “comorbidities”), including high blood pressure, high cholesterol, diabetes, depression, chronic lung disease, among others, which can increase the risk of MS relapses, disease progression, disability and even a shortened lifespan. Your primary care provider can help ensure that you are getting regular check-ups, timely vaccinations, and the preventive assessments/strategies that are recommended for your sex and age group. Your PCP can also help with smoking cessation – one of the best things you can do to improve your health and slow MS progression.

Partnering with Your Team Members

Shared decision-making is at the heart of a successful and satisfying partnership. Whether you want to be a key player in the decision-making process or you tend to be more comfortable when your doctor takes a more directive approach, the key in shared-decision making is that your needs and priorities take center stage. MS Path 2 Care provides helpful tips on how to be proactive with your healthcare and collaborative with your healthcare providers. The National MS Society offers information on how to make the most of each visit with your provider.

Being a partner in your care and responsible with each of your healthcare providers is to: 1) see them on whatever schedule they recommend; 2) provide accurate and detailed information about your history and your symptoms, the treatments you are receiving and the prescription and over-the-counter medications you are taking; 3) be as clear as you can be about your personal priorities and your goals for treatment and quality of life. Your healthcare provider can’t provide optimal care while wearing a blindfold, so don’t be bashful about sharing what is going on with you – the good, the bad and the ugly. Make sure that you fully understand your treatment options, whether for managing your disease course or your symptoms. Each option has potential benefits as well as potential risks, so understanding them thoroughly will help you make the choices that best meet your needs.

It helps to bring someone with you to take notes and be a second pair of ears so that you can review and remember all that was said during your appointment. And if you don’t understand something the healthcare provider said to you, be sure to ask for clarification. You can’t take optimal care of yourself if you don’t understand what’s going on or what you’re supposed to be doing.

Including Your Support Partner

Support partners – spouses, partners, adult children, other close family members or friends – whether they provide hands-on assistance with your care or primarily emotional support, are also living with MS. Too often, support partners who take on many additional roles and responsibilities in addition to their regular employment and/or childcare responsibilities tend to ignore their own health and wellbeing. Their health conditions, whether physical or emotional, may be neglected because of their focus on the demands of MS. Encourage your support partner(s) to attend to their own health, to see their primary care provider on a regular basis, and to pay attention to their own emotional well-being. As the flight attendant says on every flight – it is important to put on your own oxygen mask before assisting someone else. MS is a team effort, so you and your support partner(s) need to work together in order to enjoy optimal health, wellness and quality of life in spite of MS.

Key Take-Aways

• You are at the center of your healthcare team, whether your providers work together in one treatment facility or are spread out in the community.
• Your role is to make sure your healthcare providers have the information they need to make personalized recommendations that meet your needs, goals, and priorities.
• Remember that your overall health and wellness are as important as your MS care. The healthier you are, the better you will be able to manage and navigate the challenges of MS.
• Can Do MS offers many programs and online resources to help you navigate those challenges, including Can Do on Demand and an extensive library of webinars and articles.

 For information from thirdAGE on MS, click here.