Primary Progressive Multiple Sclerosis (PPMS) Patient Education

What is Primary Progressive Multiple Sclerosis (PPMS)?

PPMS is a type of multiple sclerosis where symptoms slowly get worse over time from the very beginning. Unlike other types of MS, there are no clear flare-ups or times when symptoms improve. This means the disease steadily progresses.

Causes and Risk Factors

• The exact cause of PPMS is not known.
  
  

• It happens because the immune system attacks the protective covering (myelin) of the nerves in the brain and spinal cord.
  
  

• Risk factors include:
  
  

  • Being between 30 and 50 years old.
    
    

  • Having a family history of MS.
    
    

  • Being male or female (PPMS affects men and women more equally than other MS types).
    
    

  • Possible environmental factors like infections or low vitamin D.
    
    

Signs and Symptoms (Early Warning Signs)

• Gradual muscle weakness or stiffness.
  
  

• Trouble walking or balance problems.
  
  

• Numbness or tingling in arms, legs, or face.
  
  

• Fatigue or feeling very tired.
  
  

• Bladder or bowel problems.
  
  

• Trouble thinking clearly or concentrating.
  
  

Complications if Untreated or If You Don’t Follow Treatment

• Symptoms get worse faster.
  
  

• Loss of ability to walk or do daily activities.
  
  

• More falls and injuries.
  
  

• Increased risk of infections.
  
  

• Depression or anxiety may develop.
  
  

Treatment and Self-Care Measures

• There is no cure, but treatments can help manage symptoms and improve quality of life.
  
  

• Physical therapy and exercise can help maintain strength and balance.
  
  

• Follow your doctor’s plan carefully.
  
  

• Eat healthy foods and stay hydrated.
  
  

• Get plenty of rest.
  
  

• Manage stress with relaxation or counseling.
  
  

• Avoid smoking and limit alcohol.
  
  

• Use mobility aids if needed.
  
  

Common Types of Medications

• Disease-modifying therapies (DMTs): Some may be used to slow progression, though options are more limited than other MS types.
  
  

• Symptom medications: For muscle spasms, fatigue, pain, bladder problems, or depression.
  
  

• Physical therapy medications: Muscle relaxants or pain relievers.
  
  

Purpose and Side Effects of Medications

• DMTs aim to slow nerve damage but may cause side effects like flu-like symptoms or injection reactions.
  
  

• Muscle relaxants may cause drowsiness or weakness.
  
  

• Symptom drugs vary and side effects depend on the medication.
  
  

• Always tell your doctor if you have side effects.
  
  

Dietary Needs

• Eat lots of fruits, vegetables, whole grains, lean proteins, and healthy fats.
  
  

• Drink plenty of water.
  
  

• Vitamin D might be helpful; talk to your doctor about supplements.
  
  

• Avoid too much salt, sugar, and processed foods.
  
  

Lifestyle Changes

• Stay active but avoid overheating.
  
  

• Use walking aids if balance is poor.
  
  

• Plan rest breaks.
  
  

• Avoid smoking.
  
  

• Seek support from family, friends, or support groups.
  
  

Safety Considerations

• Remove tripping hazards at home.
  
  

• Use handrails and non-slip mats.
  
  

• Avoid hot baths or hot weather which can worsen symptoms.
  
  

• Report new or worsening symptoms to your doctor.
  
  

Prevention and Maintenance Tips

• Take medicines as prescribed.
  
  

• Attend all doctor appointments and tests.
  
  

• Manage stress.
  
  

• Maintain healthy weight.
  
  

• Avoid infections by washing hands and staying up to date on vaccines.
  
  

• Keep a symptom diary to track changes.
  
  

When to Call for Help

• Call your Home Health Agency or Doctor if:
  
  

  • You have new or worsening symptoms.
    
    

  • You develop fever, chills, or signs of infection.
    
    

  • You have trouble walking or doing daily tasks.
    
    

  • You experience medication side effects.
    
    

  • You feel very tired or weak.
    
    

• Go to the Emergency Room if:
  
  

  • You suddenly lose strength or feeling on one side of the body.
    
    

  • You have sudden trouble speaking, seeing, or understanding speech.
    
    

  • You lose control of bladder or bowel.
    
    

  • You have severe headache or neck stiffness.
    
    

  • You have trouble breathing or chest pain.
    
    

© 2025 Judith Regan / K.N.O.W. – Knowledge for Nurturing Optimal Well-Being. All rights reserved. | Educational use only | Not a substitute for medical advice | In emergencies call 911

PATIENT HOMEWORK/ASSESSMENT

Please choose True or False and correct ALL False statements

1. True or False: PPMS symptoms slowly worsen from the start without flare-ups.
   
   

2. True or False: PPMS only affects women.
   
   

3. True or False: Fatigue is a common symptom of PPMS.
   
   

4. True or False: There is a cure for PPMS.
   
   

5. True or False: Disease-modifying therapies can be used to slow PPMS progression.
   
   

6. True or False: Exercise can help maintain strength and balance in PPMS.
   
   

7. True or False: You should stop medications when symptoms improve.
   
   

8. True or False: Smoking worsens PPMS symptoms.
   
   

9. True or False: Hot baths and saunas are safe for people with PPMS.
   
   

10. True or False: Muscle relaxants may help reduce spasms in PPMS.
    
    

11. True or False: New numbness or weakness should be reported to your doctor immediately.
    
    

12. True or False: You should attend all medical appointments for PPMS.
    
    

13. True or False: PPMS symptoms usually come and go with clear flare-ups and remissions.
    
    

14. True or False: Managing stress can help reduce symptom worsening.
    
    

15. True or False: You should use assistive devices if you have balance problems.
    
    

16. True or False: Vitamin D supplements may be helpful for MS patients.
    
    

17. True or False: It is important to avoid infections in PPMS.
    
    

18. True or False: PPMS symptoms can cause bladder or bowel problems.
    
    

19. True or False: Sudden loss of speech or vision requires emergency care.
    
    

20. True or False: You should keep a symptom diary to track your health.
    
    

ASSESSMENT of WELL-BEING INDIVIDUALIZED PATIENT HOMEWORK

Individualized Questions to Ask Your Doctor or Healthcare Team

• What is my type of MS, and what should I expect with PPMS?
  
  

• What lab tests or imaging will I need, and how often?
  
  

• Are my current medications effective, and what side effects should I watch for?
  
  

• What diet changes would help me feel better?
  
  

• How can I safely exercise or stay active?
  
  

• What early signs mean my PPMS is getting worse?
  
  

• How can I reduce the risk of infections?
  
  

• What support services are available to help me at home?
  
  

• Should I consider counseling or support groups?
  
  

Answer Key for PPMS True/False Statements with Explanations

1. True
   PPMS symptoms slowly worsen without clear flare-ups or remissions.
   
   

2. False
   PPMS affects men and women about equally.
   
   

3. True
   Fatigue is common in PPMS and all forms of MS.
   
   

4. False
   There is no cure for PPMS, but treatments can help manage symptoms.
   
   

5. True
   Some disease-modifying therapies can be used to slow PPMS progression.
   
   

6. True
   Exercise helps maintain strength and balance but should be done safely.
   
   

7. False
   You should never stop medications without talking to your doctor first.
   
   

8. True
   Smoking worsens MS symptoms and disease progression.
   
   

9. False
   Hot baths and saunas raise body temperature and may worsen symptoms.
   
   

10. True
    Muscle relaxants help reduce muscle spasms and stiffness.
    
    

11. True
    New or worsening symptoms should be reported immediately.
    
    

12. True
    Regular appointments are important for monitoring disease and treatment.
    
    

13. False
    PPMS does not have clear flare-ups and remissions; it worsens steadily.
    
    

14. True
    Stress can worsen symptoms, so managing stress is important.
    
    

15. True
    Assistive devices improve safety if you have balance problems.
    
    

16. True
    Vitamin D may help some MS patients; check with your doctor.
    
    

17. True
    Avoiding infections is important because infections can worsen symptoms.
    
    

18. True
    Bladder and bowel problems are common due to nerve damage.
    
    

19. True
    Sudden loss of speech or vision is an emergency requiring immediate care.
    
    

20. True
    Keeping a symptom diary helps track health changes and informs your care team.