MS Diagnosis Next Steps

True comprehensive MS care really does take a village. In addition to the commitment you make to your own health and wellbeing, and the support and assistance you receive from family and friends, a multidisciplinary team of MS specialists can help you manage your MS and the symptoms it causes. So, what does comprehensive care look like? And who are the specialists you are likely to work with along the way?

What Does Comprehensive Care Look Like?

In order for your care to be comprehensive, it needs to address your physical, emotional, social, vocational, and spiritual well-being. In other words, comprehensive care attends to your overall health and wellness as well as your MS. For some people, this kind of care takes place at an MS comprehensive care center while for others, it is provided by a team that you assemble over time. For help in finding MS care centers as well as individual MS specialists in your area, go to the National MS Society’s website at https://www.nationalmssociety.org/resources/get-support/find-doctors-and-resources.

Comprehensive MS care has several essential components:

• Disease Management

This key element of your care starts with a prompt, accurate diagnosis and continues with early and ongoing treatment with a disease-modifying therapy (DMT). These medications reduce inflammation and relapses (also called attacks or exacerbations), and slow disease progression. At the present time, there are more than 20 medications approved by the U.S. Food & Drug Administration (FDA), which means that you and your MS care provider will work together to determine which medication best meets your needs, priorities, lifestyle, and preferences. The benefit of having so many medications to choose from is that there are other options to try if the first medication doesn’t adequately control your MS.

• Symptom Management

Because MS attacks of inflammation and damage occur in random location in the central nervous system (CNS), the range of possible symptoms is wide – including problems with vision, mobility, bladder and bowel function, sexual function, pain, thinking and memory, and mood, among others. Careful management of symptoms when and if they occur is essential for your health, comfort, safety, and independence. And chances are that many different members of the healthcare team will assist you with your symptoms over the course of your MS.

• Rehabilitation

The rehabilitation team helps you stay mobile, safe, comfortable, and independent. Starting at the time of diagnosis, they can recommend strategies for fatigue management and energy conservation, provide an exercise plan that aligns with your abilities and preferences, and offer a wide array of tools and devices to make daily activities easier and safer. And it’s the rehab team that helps with cognitive challenges and problems with speech and swallowing.

• Relapse Management

A relapse is defined as a new or worsening MS symptom caused by inflammation in the CNS that lasts at least 24 hours and isn’t related to an infection or other cause. Relapses are followed by partial or complete recovery. Early and ongoing treatment with a DMT has markedly reduced the number of relapses for most people. If a relapse does occur, however, you and your MS care provider will decide whether to wait it out or to treat it with a short course of high-dose corticosteroids. The decision will likely depend on the degree to which the symptoms you’re experiencing significantly disrupt your daily activities. Following an MS relapse, it’s the rehabilitation team that helps you regain function you may have lost.

• Psychosocial Support

When a person is diagnosed with MS, the whole family lives with its impact – which is why we refer to MS as a “we disease” rather than a “me disease.” The MS care team provides support for the whole family, particularly around the common feelings of grief, anxiety, and fear that can follow an MS diagnosis. In addition, the team provides diagnosis and treatment of depression, anxiety, and other mood changes that are so common in MS. Helping with employment challenges, planning for the unpredictable future, and staying engaged and connected with the community are all part of comprehensive MS care.

Who are the Specialists on the MS Care Team?

• MS care provider: May be a neurologist or advanced practice provider (nurse practitioner or physician assistant). While you’re the coach for the whole team, your MS care provider is the team captain.
• Primary care provider: The clinician who attends to your overall health and preventive healthcare (annual physical, vaccinations, screening tests appropriate for your age and sex)
• Physical therapist (PT): Offers a complete exercise program geared to your abilities and limitation, as well as physical activity recommendations with a focus on mobility, safety, and enjoyment. PTs also recommend mobility equipment and provide education in its safe and proper use. Pelvic floor PTs treat bladder, bowel, and sexual dysfunction.
• Occupational therapist (OT): Focuses primarily on energy management and upper body function. OTs offer tips and tools to simplify tasks at home and work (dressing, bathing, toileting, cooking, computer work, driving, among others), as well as strategies for making your home safer and more accessible.
• Speech/language pathologist (S/LP): Diagnoses and treats problems with speech and swallowing. S/LPs also provide evaluation and treatment of cognitive changes.
• Mental health professional (psychologist, psychiatrist, social worker, counselor): Provides diagnosis and treatment of depression, anxiety, and other mood changes, and emotional support for people with MS and their care partners throughout the disease course. These professionals help with family planning decisions, life transitions, and building safety nets for the unpredictable future.
• Neuropsychologist: Specializes in the evaluation and treatment of cognitive problems (with information processing, memory, attention, planning, and decision-making)
• Urologist: Diagnoses and treats bladder problems in women and men, as well as male sexual dysfunction
• Physical Medicine and Rehabilitation specialist: Addresses challenges you may experience with mobility, balance and/or spasticity. These clinicians can help you select appropriate assistive devices, and treat symptoms with medications, injections such as Botox, or procedures.
• Gastroenterologist: Treats constipation and other bowel symptoms
• Registered dietician/certified nutrition counselor: Provides counseling around nutrition and healthy eating habits
• Pharmacist: Whether in specialty pharmacies that provide medications requiring special handling or in your local pharmacy, these members of the team provide information, counseling related to your medication, and assistance with side effects

The comprehensive care team is truly a village. They will be available when and if you need them at any point along the way. You may even decide to get to know them sooner rather than later, just so you’ll know whom to call when you experience a problem.