Secondary Progressive Multiple Sclerosis (SPMS) Patient Education

What is SPMS?

Secondary Progressive Multiple Sclerosis (SPMS) is a type of multiple sclerosis where symptoms slowly get worse over time. It often starts after a person has had relapsing-remitting MS (RRMS), which means they had flare-ups followed by times of feeling better. In SPMS, the disease stops having clear relapses and instead steadily progresses.

Causes and Risk Factors

MS happens because the immune system attacks the protective covering of nerves called myelin.
The exact cause of MS is unknown but may include genetics and environmental factors.
People with RRMS may eventually develop SPMS after several years.
Risk factors include being female, ages 20-50, and having certain genes.

Signs and Symptoms

Worsening weakness or stiffness in arms or legs
Trouble walking or balance problems
Increased fatigue and difficulty thinking clearly (called cognitive problems)
Bladder or bowel problems
Muscle spasms or pain
Vision problems
Early warning signs include feeling more tired than usual or new weakness.

Complications if Untreated or Noncompliance

Symptoms may worsen faster without treatment.
Increased risk of disability and needing help to walk or do daily activities.
Higher chance of infections like urinary tract infections.
Emotional challenges like depression or anxiety.

Treatment and Self-Care Measures

There is no cure, but treatments can help slow progression and manage symptoms.
Disease-modifying therapies (DMTs) may still be used in SPMS to reduce worsening.
Physical therapy helps improve strength and mobility.
Occupational therapy can assist with daily activities.
Regular exercise adapted to ability can help maintain function.
Rest and managing stress are important.

Common Medications

Disease-Modifying Therapies (DMTs): Slow down disease progression (e.g., siponimod, ocrelizumab).
Corticosteroids: Used during flare-ups to reduce inflammation.
Muscle relaxants: Help control muscle spasms.
Pain medications: For nerve pain.
Bladder and bowel medications: To manage related symptoms.

Purpose and Side Effects of Medications

DMTs reduce new damage but may cause flu-like symptoms, infections, or liver problems.
Steroids can cause mood changes, weight gain, and increased blood sugar.
Muscle relaxants may cause drowsiness or weakness.
Always tell your doctor about side effects.

Dietary Needs and Lifestyle Changes

Eat a balanced diet with fruits, vegetables, whole grains, and lean proteins.
Stay hydrated by drinking plenty of water.
Avoid excessive salt and caffeine to help with bladder symptoms.
Quit smoking and limit alcohol, as they can worsen MS.
Maintain a healthy weight to reduce stress on your body.

Safety Considerations

Avoid extreme heat or cold, which may worsen symptoms.
Use assistive devices if needed to prevent falls.
Plan rest periods to manage fatigue.
Make home safer with grab bars or removing tripping hazards.
Inform healthcare providers about all medications you take.

Prevention and Maintenance Tips

Keep regular appointments with your neurologist.
Take medications as prescribed.
Report new symptoms quickly.
Get flu and pneumonia vaccines to avoid infections.
Manage stress through relaxation techniques or counseling.
Stay active within your limits.

When to Call Your Home Health Nurse or Doctor — vs — When to Go to the Emergency Room

Call Your Home Health Nurse or Doctor If You Have:

New or worsening weakness or numbness that is not getting suddenly worse
Increasing trouble with walking, balance, or coordination that is gradual
Mild to moderate pain that can be managed with your medications
Changes in bladder or bowel habits, such as mild difficulty or urgency
Fever or signs of infection like burning when you urinate, but you feel able to wait for care
Feeling very tired or more fatigued than usual
New or worsening muscle spasms or stiffness
Any new symptoms that develop slowly and are not severe
Concerns about medication side effects or questions about your treatments
Emotional changes like feeling sad or anxious that are affecting your daily life

Go to the Emergency Room Immediately If You Have:

Sudden weakness or numbness, especially if it affects your face, arm, or leg on one side
Sudden trouble speaking, understanding, or confusion
Sudden vision loss or double vision that happens quickly
Severe headache that comes on suddenly or is worse than usual
Difficulty breathing or chest pain
Loss of consciousness or fainting
Severe falls or injuries needing urgent care
High fever with chills that does not improve or is accompanied by stiff neck or confusion
Severe pain that cannot be controlled with your medications
Signs of a stroke or other serious medical emergency

Patient Homework / Assessment

Instructions: Choose True or False for each statement. If the statement is false, please write the correct information.

True or False: SPMS usually starts after having relapsing-remitting MS.
True or False: SPMS symptoms improve quickly without treatment.
True or False: Fatigue and muscle stiffness are common symptoms of SPMS.
True or False: Smoking can make SPMS worse.
True or False: Steroids cure SPMS completely.
True or False: You should avoid extreme temperatures to help manage symptoms.
True or False: Muscle relaxants may help control spasms but can cause drowsiness.
True or False: It is safe to stop medication if you feel better.
True or False: Drinking plenty of water can help with bladder problems.
True or False: Regular exercise can help maintain muscle strength.
True or False: You do not need to tell your doctor about side effects from your medicines.
True or False: Depression can be a complication of MS.
True or False: Assistive devices like canes can help prevent falls.
True or False: Vaccines are not important for people with SPMS.
True or False: If you have sudden vision loss, you should go to the emergency room immediately.
True or False: Occupational therapy can help with daily tasks.
True or False: It is normal for SPMS symptoms to get worse without any warning.
True or False: You should keep regular appointments with your neurologist.
True or False: Eating a diet high in fruits and vegetables is recommended.
True or False: You should call your doctor if you have signs of infection.

ASSESSMENT of WELL-BEING INDIVIDUALIZED PATIENT HOMEWORK

Individualized Patient Questions

What medications are you currently taking for your MS?
Have you noticed any new symptoms or worsening in the past month?
Do you have any difficulties with walking, balance, or daily tasks?
When was your last blood test or MRI scan?
How often do you exercise, and what type of activities do you do?
Are you following a special diet or nutritional plan?
Have you received your flu and pneumonia vaccines this year?
How do you manage stress or emotional challenges related to MS?
Do you experience muscle spasms or pain, and how do you treat them?
Have you noticed any side effects from your medications?