Daily Realities: Managing Symptoms and Knowing the Warning Signs

Living with progressive MS means managing a shifting set of physical and cognitive challenges. Because symptoms often change slowly, it can be easy to overlook the cumulative impact they have on your daily life. However, focusing on symptom management—not just the disease itself—can significantly improve your quality of life ^[1][2].

Managing Daily Symptoms

The burden of progressive MS is often “multidomain,” meaning it affects many systems at once ^[1]. Working with a multidisciplinary team (neurologists, physical therapists, occupational therapists, and speech-language pathologists) is the standard for addressing these issues ^[3][2].

• Mobility and Walking: Walking difficulties and balance problems are common ^[4].
  • Management: Physical Therapy (PT) is a cornerstone of supportive treatment, focusing on strength, balance, and safe mobility ^[1]. Options include outpatient exercise programs and assistive devices ^[5].
  • Medication: Dalfampridine (Ampyra) may improve walking speed for some. However, it is absolutely contraindicated (must not be used) in anyone with a history of seizures or moderate-to-severe kidney disease ^[6].
• Spasticity: This is a feeling of stiffness or muscle spasms that can make movement difficult ^[1].
  • Management: Stretching, positioning, and exercise are first-line defenses ^[5].
  • Medication: Oral medications like baclofen can help, but they may cause side effects like drowsiness or increased weakness ^[7]. For stiffness limited to a specific area (focal spasticity), botulinum toxin injections may be used to relax those specific muscles ^[8].
• Fatigue and Cognition: These are often the most under-treated symptoms ^[1].
  • Management: Occupational Therapy (OT) can help with energy conservation techniques. Cognitive impairment—affecting memory or processing speed—is common and should be assessed regularly through tests like the Symbol Digit Modalities Test ^[9][10].
• Bladder and Bowel Function: These issues often intensify over time ^[4][11].
  • Management: A clinical assessment for neurogenic bladder can help determine if you need specialized exercises, dietary changes, or medications to manage urgency or incontinence ^[1][12].

Relapses vs. Pseudo-Exacerbations

A true relapse is generally a new or significantly worsening neurological symptom that lasts at least 24 hours in the absence of a fever or infection.

In progressive MS, you may also experience a pseudo-exacerbation. This is a temporary worsening of your existing MS symptoms caused by an external trigger—most commonly a fever, an infection (like a UTI), or overexposure to heat ^[12]. Unlike a true relapse, a pseudo-exacerbation does not involve new damage to the brain or spine; symptoms usually return to your “baseline” once the trigger is removed ^[12]. Do not attempt to diagnose a relapse yourself; contact your MS care team for a clinical assessment.

Urgent Warnings and Emergency Care

While most MS changes are slow, certain “red flag” symptoms require immediate medical evaluation. It is critical to know when to call your neurologist versus when to call emergency services (911).

1. Medical Emergencies (Call 911 / Go to the ER)

Do not assume every sudden worsening is a pseudo-exacerbation. Some symptoms may indicate a stroke, severe infection (sepsis), or another life-threatening event:

• Stroke Symptoms: Sudden one-sided weakness, facial droop, sudden difficulty speaking or understanding speech, or sudden vision loss ^[13].
• Severe Breathing or Swallowing Issues: Sudden difficulty breathing, severe choking during meals, or severe swelling (which could indicate a dangerous allergic reaction to an infusion) ^[14][15].
• Seizures: Any first-time seizure, or a seizure lasting longer than a few minutes ^[6].
• Signs of Sepsis/Severe Infection: High fever with chills, rapid heart rate, very low blood pressure, or profound, sudden unresponsiveness ^[7][13].

2. Urgent Neurological Care (Contact Your Specialist Quickly)

If you are on disease-modifying therapies (DMTs) that suppress the immune system (such as ocrelizumab or fingolimod), your body may not fight off infections normally ^[16][17].

• Atypical Infections: Sudden, severe confusion, major increases in weakness, or frequent new falls might indicate an infection like a Urinary Tract Infection (UTI), but they can also indicate medication toxicity or other urgent problems. These require prompt clinical assessment ^[18][12].
• Progressive Multifocal Leukoencephalopathy (PML): PML is a rare but very serious brain infection that can occur with certain MS medications ^[19][17]. Watch for any new and steadily worsening neurological problem that develops subacutely (over days or weeks), such as worsening vision loss, clumsiness, or major changes in personality or thinking ^[19][16].