Multiple Sclerosis For Dummies
Whether you've recently been diagnosed with multiple sclerosis (MS) or you've been living with this chronic illness for years, you want to live your life as fully and comfortably as possible. The good news is you can. The symptoms of MS are manageable with medications, and rehabilitation strategies and treatments can reduce disease activity and slow progression. This Cheat Sheet provides insightful information about what you can do to stay active and feel your best.
Ways to Feel Your Best When You Have Multiple Sclerosis
Some days you may feel pretty lousy when you have multiple sclerosis (MS). Other days you may feel okay or just so-so. If you’re oh-so-tired of feeling way below par, not to worry. You can improve the way you feel. These helpful tips can start you on your way to feeling healthy and well in spite of MS.
Talk with your neurologist — as early in the disease process as you can — about treatment with one of the approved disease-modifying therapies to slow disease activity and progression and reduce further nerve damage as much as possible.
Work with your MS team to manage your symptoms, avoid complications, and maintain your quality of life.
If you’re feeling sad or down more often than not, contact your medical doctor or neurologist to make sure your mood gets the attention it deserves.
Make time for rest, exercise, and healthy, balanced meals.
See your general medical doctor routinely for physical exams and screening tests.
Use the following effective cooling strategies:
Avoid hot showers, hot tubs, and saunas.
Limit your time in the hot sun.
Exercise in a cool environment.
Drink iced fluids
Check out cooling vests and scarves.
Call a friend — there’s no need to go it alone.
Don’t wait for a crisis — tap the resources that are out there to help you.
Stay focused on your goals — you don’t need to make a career out of MS.
Hints to Managing Your Energy Bank with MS
When you have multiple sclerosis (MS), your energy may be in very short supply. Some days you feel like taking on the world and other days you feel like taking to your bed. You’re not alone. When you experience energy ups and downs, you can be proactive and manage your energy bank in the following ways to help you get through each day:
Set priorities to ensure the best use of your daily energy supply.
Make deposits (naps are great!) in addition to your withdrawals.
Use your energy supply efficiently by doing the following:
Using the right tools/mobility devices
Making your home/work spaces accessible and convenient
Asking for help when you need it
Do the most difficult tasks when you have the most energy.
Pace yourself instead of pushing yourself to the point of exhaustion.
Talk to your doctor about symptoms that disrupt your sleep.
Stay cool — literally and figuratively.
Review your medications with your doctor (some have sleepiness or fatigue as a side effect, while others are prescribed to relieve it).
A Snapshot of Your Healthcare Team When You Have MS
A diagnosis of multiple sclerosis (MS) means developing a strong relationship with your doctors, nurses, and other healthcare professionals. They can work with you to manage your symptoms, slow the disease course, and cope with day-to-day challenges. The following are the important members of your healthcare team:
Neurologist (or in some situations it may be a nurse practitioner or physician assistant): Diagnoses and treats MS and other neurologic diseases.
Nurse: Provides education and support for all treatment issues.
Primary care physician: Manages non-MS health issues and preventive care.
Rehabilitation specialists: Promote independence, safety, and quality of life. For example, consider the following:
Physiatrist: A physician specializing in rehabilitation medicine.
Physical therapist: Promotes strength, mobility, and balance through exercise and training in the use of mobility aids.
Occupational therapist: Promotes function in activities of daily living via energy management, assistive technology, and environmental modifications (may also treat cognitive symptoms).
Speech/language pathologist: Diagnoses and treats problems with voice quality, speech, and swallowing (may also treat cognitive symptoms).
Vocational rehabilitation counselor: Assists with career planning and retraining.
Mental health professionals: Provide diagnosis, treatment, and support for a wide range of emotional issues, as well as education for stress management, goal-setting, and problem-solving strategies.
Psychiatrist: A physician specializing in the diagnosis and treatment of mental health problems.
Psychotherapist (psychologist, social worker, counselor): Provides counseling, information, and support for individuals and families.
Neuropsychologist: Diagnoses and treats cognitive symptoms.
Additional medical specialists: Provide specialized expertise in medical areas that may be impacted by MS or are of particular interest to folks with MS.
Neuroophthalmologist: A physician specializing in neurologically related visual symptoms.
Urologist: A physician specializing in urinary problems and male sexual function.
*Obstetrician/gynecologist: A physician specializing in women’s reproductive care.
Partner with Your Neurologist to Battle Multiple Sclerosis
Your neurologist is the key member of your healthcare team. As a specialist in diseases of the nervous system, he or she provides treatment options to manage your MS and the symptoms it can cause. The neurologist can also help you engage other healthcare professionals on your team — the nurse, rehabilitation professionals, and mental health experts who can work with you to optimize your health, daily functioning, and quality of life. If you have a neurologist, keep these tips in mind to make your partnership as strong as possible. If you don’t, check out the first bullet to find a qualified specialist.
Call the National MS Society (800-FIGHT-MS or 800-344-4867) for a list of neurologists in your area with MS expertise.
For each visit to the neurologist, do the following:
Be prepared to describe and prioritize problems and symptoms.
Write down any questions you have so you don’t go home without the answers you need.
To catch everything the doc says, bring your partner or a friend or a tape recorder.
Make sure your doctor has an up-to-date list of all the medications (prescription and over-the-counter) and supplements you are taking.
Take your medications as they have been prescribed for you and be sure to talk with your doctor about any concerns, problems, or side effects.
If you don’t understand something, ask (the goal is to know more rather than less when you leave the doctor’s office).
If you need a long consultation (to discuss family planning decisions, employment decisions, sexual dysfunction, and so on), schedule a separate appointment or phone call.
Don’t wait for a crisis — see your MS doctor on a regular basis.
If you feel you need or want a second opinion, don’t hesitate to get one.