Multiple sclerosis - discharge
MS - discharge
Your health care provider has told you that you have multiple sclerosis (MS). This disease affects the brain and spinal cord (central nervous system).
At home follow your provider's instructions on self-care. Use the information below as a reminder.
Multiple sclerosis can be a particularly debilitating disorder because your body essentially attacks itself. But you can learn to cope during attacks. So, what causes multiple sclerosis? Multiple sclerosis, or MS, is a disease in which your body's immune system eats away at the protective sheath that covers your nerves. The disorder disrupts communication between your brain and the rest of your body, meaning your nerve signals slow down or stop. We don't know exactly why this happens. The most common thought is that a virus or gene defect, or both, are to blame. Environmental factors may even play a role. We do know that the disorder affects more women than men, that you may get the disorder if you have a family history of MS, and that you are at higher risk if you live in a part of the world where MS is more common. It's typically diagnosed between the ages of 20 and 40, but we see the disorder at any age. Now you may ask, how do you know you have multiple sclerosis? Symptoms of MS can vary widely from person to person because the location and severity of each attack can be different. Episodes may last for days, weeks, or months. You may even have long periods where you have no symptoms. We call this remission. Because MS may damage nerves in any part of the brain or spinal cord, you may have symptoms in many parts of the body. You may have muscle problems, including loss of balance, muscle spasms, numbness, trouble moving your arms or legs, even trouble walking. You may have bowel and bladder problems, such as constipation, trouble urinating, or a frequent urge to urinate. You may have double vision, eye pain, or uncontrolled eye movements. You will probably be tired a lot, and it's often worse in the late afternoon. And those are just a few of the many possible symptoms of MS. Since symptoms of MS may mimic those of other nervous system disorders, your doctor will want to rule those out. Your doctor may suspect MS if you have trouble with two different parts of your central nervous system (such as abnormal reflexes) at two different times. A neurological exam may show you have reduced function in one area of your body, or it may be spread over many parts of your body. You may have abnormal reflexes, decreased ability to move a part of your body, a loss of sensation. An eye exam might show abnormal pupil responses, changes in your visual field, or trouble seeing. There is no known cure for MS, so your doctor will focus on therapies to slow down the disorder, to control your symptoms and help you maintain a normal quality of life. Your doctor can prescribe different medicines to help with this. You may have to take several medications. Life expectancy with MS can be normal, or almost normal. Most people with MS continue to walk and function at work with minimal disability for 20 or more years. The amount of disability and discomfort can depend on how often you have attacks, on how bad they are, and what part of the central nervous system is affected by each attack. Most people return to normal or near-normal function between attacks. But, over time, many people with MS will need a wheelchair. To help you maintain a normal quality of life, your doctor may suggest physical therapy, speech therapy, occupational therapy, and support groups, depending on your needs. Starting an exercising program early in the course of your disorder, eating right, and getting enough rest can also help.
What to Expect at Home
Symptoms vary from person to person. With time, each person may have different symptoms. For some people, symptoms last days to months, then lessen or go away. For others, symptoms don't improve or only very little.
Over time, symptoms may get worse (progression), and it becomes harder to take care of yourself. Some people have very little progression. Others have more severe and rapid progression.
Activity
Try to stay as active as you can. Ask your provider what kind of activity and exercise are right for you. Try walking or jogging. Stationary bicycle riding is also good exercise.
Benefits of exercise include:
- Helps your muscles stay loose
- Helps you keep your balance
- Good for your heart
- Helps you sleep better
- Helps you have regular bowel movements
If you have problems with spasticity, learn about what makes it worse. You or your caregiver can learn exercises to keep muscles loose.
Keep from Getting Overheated
Increased body temperature can make your symptoms worse. Here are some tips to prevent overheating:
- Exercise in the morning and the evening. Be careful not to wear too many layers of clothes.
- When taking baths and showers, avoid water that is too hot.
- Be careful in hot tubs or saunas. Make sure somebody is around to help you if you become overheated.
- Keep your house cool in the summer with air conditioning.
- Avoid hot drinks if you notice problems with swallowing, or other symptoms get worse.
Home Safety
Make sure your home is safe. Find out what you can do to prevent falls and keep your bathroom safe to use.
If you are having trouble moving around in your house easily, talk with your provider about getting help.
Your provider can refer you to a physical therapist to help with:
- Exercises for strength and moving around
- How to use your walker, cane, wheelchair, or other devices
- How to set up your home to safely move around
Bladder Care
You may have problems starting to urinate or emptying your bladder all the way. Your bladder may empty too often or at the wrong time. Your bladder may become too full and you may leak urine.
To help with bladder problems, your provider may prescribe medicine. Some people with MS need to use a urinary catheter. This is a thin tube that is inserted into your bladder to drain urine.
Your provider may also teach you some exercises to help you strengthen your pelvic floor muscles.
Urinary infections are common in people with MS. Learn to recognize the symptoms, such as burning when you urinate, fever, low back pain on one side, and a more frequent need to urinate.
Do not hold your urine. When you feel the urge to urinate, go to the bathroom. When you are not at home, take note of where the nearest bathroom is.
Bowel Care
If you have MS, you may have trouble controlling your bowels. Have a routine. Once you find a bowel routine that works, stick with it:
- Pick a regular time, such as after a meal or a warm bath, to try to have a bowel movement.
- Be patient. It may take 15 to 45 minutes to have bowel movements.
- Try gently rubbing your belly to help stool move through your colon.
Avoid constipation:
- Drink more fluids.
- Stay active or become more active.
- Eat foods with lots of fiber.
Ask your provider about medicines you're taking that may cause constipation. These include some medicines for depression, pain, bladder control, and muscle spasms.
Skin Care
If you are in a wheelchair or bed most of the day, you need to check your skin every day for signs of pressure sores. Look closely at:
- Heels
- Ankles
- Knees
- Hips
- Tailbone
- Elbows
- Shoulders and shoulder blades
- Back of your head
Staying Healthy
Keep up to date with your vaccinations. Get a flu shot every year. Ask your provider if you need a pneumonia shot.
Ask your provider about other checkups you may need, such as to test your cholesterol level, blood sugar level, and a bone scan for osteoporosis.
Eat healthy foods and keep from becoming overweight.
Other Care
Learn to manage stress. Many people with MS feel sad or depressed at times. Talk to friends or family about this. Ask your provider about seeing a professional to help you with these feelings.
You may find yourself getting tired more easily than before. Pace yourself when you do activities that may be tiring or need a lot of concentration.
Your provider may have you on different medicines to treat your MS and many of the problems that may come with it:
- Make sure you follow instructions. Do not stop taking medicines without first talking to your provider.
- Know what to do if you miss a dose.
- Store your medicines in a cool, dry place, and away from children.
When to Call the Doctor
Contact your provider if you have:
- Problems taking drugs for muscle spasms
- Problems moving your joints (joint contracture)
- Problems moving around or getting out of your bed or chair
- Skin sores or redness
- Pain that is becoming worse
- Recent falls
- Choking or coughing when eating
- Signs of a bladder infection (fever, burning when you urinate, foul urine, cloudy urine, or frequent urination)
References
Calabresi PA. Multiple sclerosis and demyelinating conditions of the central nervous system. In: Goldman L, Schafer AI, eds. Goldman-Cecil Medicine. 26th ed. Philadelphia, PA: Elsevier; 2020:chap 383.
Fabian MT, Krieger SC, Lublin FD. Multiple sclerosis and other inflammatory demyelinating diseases of the central nervous system. In: Jankovic J, Mazziotta JC, Pomeroy SL, Newman NJ, eds. Bradley and Daroff's Neurology in Clinical Practice. 8th ed. Philadelphia, PA: Elsevier; 2022:chap 80.
National Multiple Sclerosis Society website. Living well with MS.
Version Info
Last reviewed on: 7/26/2022
Reviewed by: Evelyn O. Berman, MD, Assistant Professor of Neurology and Pediatrics at University of Rochester, Rochester, NY. Review provided by VeriMed Healthcare Network. Also reviewed by David C. Dugdale, MD, Medical Director, Brenda Conaway, Editorial Director, and the A.D.A.M. Editorial team.
