In addition to your neurologist and primary care physician, a number of health professionals may become involved in helping you manage life with multiple sclerosis (MS). If you’re fortunate to have access to a comprehensive MS center, you may find many of these specialists all in one place. Otherwise, you’ll need to round them up on your own or gather them with the help from your neurologist or family physician.
MS care team: Nurse for education, guidance, and support
Over the past several years, nurses have taken on a key role in multiple sclerosis (MS) care, and you’ll find that many MS doctors are fortunate enough to have a nurse on staff. Nurses are involved in:
Providing education to MS patients and their families
Helping patients implement the doctor’s treatment recommendations — particularly in relation to disease-modifying therapies and symptom management
Responding to patients’ questions and concerns
Given the limited amount of time that most doctors have to spend with their patients these days, the nurse’s role is particularly important in ensuring the comprehensiveness of your care. The nurse may be the one who responds to your phone calls, renews your prescriptions, trains you in self-injection techniques, helps you manage your side effects, and connects you with the specialists involved in your care.
The nurse can be a tremendous ally and support person — in other words, he or she is your new best friend.
MS care team: Rehabilitation specialists to help you keep on truckin’
Rehabilitation promotes a person’s independence, safety, and overall quality of life. It’s a personalized, interactive process designed to help each person maintain the highest possible level of function, given whatever impairments the MS may have caused. Whether they concentrate on physical, occupational, speech/language, or vocational rehabilitation, each of the rehab specialists contributes something unique to MS care.
Unfortunately, insurance coverage for these services varies greatly from one insurance plan to another, so you’ll have to look carefully into your coverage to determine which services may be covered for you, and for how many visits. And remember that the National MS Society ((800) 344-4867; 800-FIGHT-MS) may be able to refer you to local rehab professionals who are experienced in MS.
MS care team: Mental health specialists to help you keep your head on straight
If you’re thinking “I’m not crazy! I don’t need any help from those guys!” just know that these specialists come in handy even if you’re healthy, happy, and sane. The mental health professionals who work in MS are used to working with individuals who were doing fine until the disease came along, but then needed some education, coping strategies, emotional support, and problem-solving tools for dealing with this new challenge in their lives.
In fact, your friendly mental health professional can be a lot like your accountant or lawyer — someone you call when you have a problem to solve or an issue to discuss. The good thing about this type of setup is that in the event that you do begin to experience any of the emotional changes that MS can cause, your mental health professional can offer the treatment and referrals you need.
Fortunately, most insurance plans cover at least some outpatient mental services, but typically not at the same level that they cover medical services.
The biggest roadblock in getting support is your own attitude about it. If you consider reaching out to available resources to be a sign of weakness, you’ll miss out on some valuable partnerships. If, on the other hand, you see support services as one more tool for managing MS, you’ll feel stronger and more prepared to handle whatever comes your way.
The psychotherapists who specialize in chronic illness see themselves as consultants or coaches who can help you chart your course. You may, for example, want to talk about your new diagnosis and plan your next steps in an environment that’s less nerve-wracking than the doctor’s office. Then, you may go back later to talk about changing symptoms, employment issues, or parenting challenges.
And further down the road, you may go again to talk about retirement or long-term care options. Sometimes it just helps to have a place to deal with feelings and brainstorm some strategies. If necessary, the mental health professionals are also available to help you with the mood and cognitive changes that are so common in MS.
MS care team: Other important specialists
In many neurologists’ offices, nurse practitioners (NPs) and physician assistants (PAs) provide a lot of the hands-on care. They’re collaborating with the doctor to make sure that your care is coordinated and consistent.
Your family doctor, dentist, and — if you’re female — the gynecologist are also key players in helping you take care of yourself. A urologist takes care of your urinary system, and if you’re male, he or she takes care of your sexual organs as well. Because urinary symptoms are so common in MS, you may get to know your urologist pretty well over the years.
The main thing to remember is that having MS isn’t a reason to neglect other aspects of your care.