Living with Ocular Myasthenia Gravis - Patient Guide

Myasthenia gravis (MG) affecting the eyes can be frustrating—symptoms fluctuate, vary throughout the day, and can be hard to explain to others. Whether you have ocular-only MG or generalized MG with eye involvement, this guide will help you understand your condition, manage daily life, and know when to seek help.

Understanding Your Condition

Myasthenia gravis is an autoimmune condition where the immune system attacks the connection between nerves and muscles. In ocular MG, this primarily affects the eye muscles, causing:

• Double vision (diplopia)
• Drooping eyelids (ptosis)
• Fatigue-related worsening of symptoms
• Variable symptoms throughout the day

The Hallmark of MG: Variability

MG symptoms characteristically:

• Worsen with use—reading, driving, and screen work tire the eyes
• Improve with rest—symptoms often better in the morning
• Fluctuate day to day—even hour to hour
• Can be asymmetric—one eye worse than the other

This variability can make MG confusing to diagnose and frustrating to live with, but it also provides clues for management.

Diagnosis

If you haven't been diagnosed yet, several tests help confirm MG:

Ice Pack Test

A simple bedside test:

• Ice is applied to closed eyelids for 2 minutes
• Cold temporarily improves nerve-muscle transmission
• If ptosis improves, it suggests MG
• Quick, painless, and often performed in the office

Blood Tests

Acetylcholine Receptor Antibodies

• Positive in about 50% of ocular MG
• Higher positivity rate in generalized MG
• A positive test confirms the diagnosis

Anti-MuSK Antibodies

• Tested if AChR antibodies are negative
• Present in a subset of MG patients
• Associated with different clinical features

Single-Fiber EMG

• The most sensitive test for MG
• Records electrical activity in muscles
• Used when antibodies are negative
• Requires special expertise

Treatment Options

Pyridostigmine (Mestinon)

The first-line medication for symptom control:

How it works:

• Prevents breakdown of acetylcholine
• Improves nerve-muscle transmission
• Works within 30-60 minutes

Using it effectively:

• Timing matters—take 30-60 minutes before activities that worsen symptoms
• Effects last 3-5 hours
• Can be taken multiple times daily
• Extended-release form available for night symptoms

Side effects:

• GI symptoms (cramping, diarrhea, nausea)—often manageable
• Excessive salivation or tearing
• Muscle twitching at high doses

Prednisone and Other Steroids

May be used when pyridostigmine alone isn't enough:

• More effective for double vision than for ptosis
• Started cautiously (can temporarily worsen MG)
• Often used to transition to steroid-sparing agents

Azathioprine

A common steroid-sparing immunosuppressant:

• Takes 6-12 months for full effect
• Allows reduction of steroid dose
• Requires monitoring with blood tests
• Check for enzyme deficiency before starting

Other Immunosuppressants

Your doctor may use other medications like mycophenolate, depending on your response and tolerability.

IVIG (Intravenous Immunoglobulin)

• Used for exacerbations or pre-surgery preparation
• Given as infusion over several days
• Temporary but rapid improvement
• Expensive but effective

Plasmapheresis

• Removes antibodies from the blood
• Used for severe exacerbations or crisis
• Rapid but temporary effect
• Reserved for specific situations

Thymectomy

Removal of the thymus gland:

• May benefit some ocular MG patients
• More established role in generalized MG
• Discussed on an individual basis
• Effects take months to years to appear

Daily Coping Strategies

Managing Fluctuating Symptoms

Morning routine:

• Symptoms are often best after sleep
• Schedule important tasks for morning when possible
• Give yourself extra time to avoid rushing

Throughout the day:

• Take regular breaks during visual tasks
• Close your eyes for a few minutes when fatigued
• Alternate tasks to avoid muscle fatigue

Evening:

• Expect worsening—it's not a setback
• Reduce demanding activities
• Use strategies like patching to rest eyes

Dealing with Double Vision

Temporary solutions:

• Patching one eye eliminates double vision
• Alternate which eye you patch to maintain vision in both
• Frosted tape on glasses is less noticeable than a patch

Prism glasses:

• Can correct stable misalignment
• May need frequent adjustment in MG (symptoms vary)
• Fresnel (stick-on) prisms useful for changing measurements

Positioning:

• Some directions of gaze are worse than others
• Find head positions that minimize diplopia
• Adjust screen positions to your best gaze angle

Managing Drooping Eyelids

Temporary measures:

• Ptosis crutches (supports attached to glasses)
• Tape (under medical guidance)
• Taking breaks to rest lid muscles

Long-term:

• Medication optimization often helps
• Surgery is possible for stable, persistent ptosis

Driving

Medications to Avoid

Some medications can worsen MG. Always carry a list and show it to any new healthcare provider:

• Certain antibiotics (aminoglycosides, fluoroquinolones, macrolides)
• Some heart medications (beta-blockers, calcium channel blockers)
• Magnesium supplements
• Botulinum toxin (Botox)
• Many others—always check before starting new medications

Watching for Generalization

About 50% of patients with ocular-only MG will develop generalized MG (affecting other muscles) within 2 years. Knowing the signs helps early recognition and treatment.

Warning Signs of Generalization

Reducing Generalization Risk

Some evidence suggests that immunosuppressive treatment in ocular MG may reduce the risk of generalization. Discuss this with your neurologist.

Emergency Preparedness: Myasthenic Crisis

Myasthenic crisis occurs when weakness affects breathing muscles. It's a medical emergency.

Signs of Crisis

• Severe shortness of breath
• Difficulty clearing secretions
• Inability to swallow
• Rapid worsening of weakness

What to Do

• Call 911 or go to the emergency room immediately
• Tell them you have myasthenia gravis
• Bring your medication list and emergency information

Prevention

• Take medications as prescribed
• Avoid known triggers (certain medications, infections)
• Treat infections promptly
• Get vaccinated against respiratory infections (flu, COVID-19, pneumonia)—discuss timing with your doctor
• Know the warning signs

Emergency Information to Carry

Consider carrying a card or medical ID with:

• Diagnosis of myasthenia gravis
• Current medications
• Medications to avoid
• Emergency contact information
• Doctor's name and number

Working with Your Healthcare Team

Specialists You May See

• Neurologist: Overall MG management, medications
• Neuro-ophthalmologist: Eye-specific issues, prism glasses, monitoring
• Thoracic surgeon: If thymectomy is considered
• Primary care doctor: General health, vaccinations

Communication Tips

• Keep a symptom diary to share at appointments
• Write down questions before visits
• Report any new or worsening symptoms promptly
• Inform all providers of your MG diagnosis

Frequently Asked Questions

Will my MG ever go away?

Some patients achieve remission (symptoms disappear with or without medication), but MG is typically a lifelong condition. The good news is that most patients can achieve excellent symptom control with proper treatment.

Why do my symptoms change so much?

Variability is characteristic of MG. The nerve-muscle connection fatigues with use and recovers with rest. Heat, illness, stress, and certain medications can worsen symptoms. This variability, while frustrating, helps distinguish MG from other conditions.

Can I have surgery safely with MG?

Yes, but precautions are needed. Your surgeon and anesthesiologist must know about your MG. Certain anesthetic drugs affect patients with MG differently. Perioperative IVIG or plasmapheresis may be recommended. Plan ahead and communicate with your team.

Is MG hereditary?

MG itself isn't directly hereditary, but there may be a familial tendency toward autoimmune diseases. Children of MG patients don't usually develop MG, though newborns can have temporary symptoms if the mother has MG.

Can stress affect my symptoms?

Yes. Emotional stress, heat, illness, and lack of sleep can all worsen MG symptoms. While you can't avoid all stress, stress management techniques may help.

Should I get vaccinated?

Yes, generally. Respiratory infections can be dangerous for MG patients and may trigger exacerbations or crisis. Vaccines help prevent infections. Discuss timing and which vaccines are appropriate with your healthcare team—some (like flu and COVID) are especially recommended.

What if my medication isn't working?

Medication optimization takes time. Pyridostigmine dosing may need adjustment. Adding immunosuppression may be needed. Report inadequate control to your doctor—there are multiple treatment options available.

Can I exercise with MG?

Moderate exercise is generally beneficial, but listen to your body. Avoid exhaustion, which can worsen symptoms. Some activities may be limited by fluctuating vision. Discuss an exercise plan with your doctor.

Resources and Support

• Myasthenia Gravis Foundation of America: Information and support groups
• Online communities: Connect with other MG patients
• Local support groups: Check with your doctor or MG foundation

Living with MG can be challenging, but connecting with others who understand your experience helps.

References