Start your MG journey with a
proactive plan:
A guide for the
newly diagnosed
Receiving a diagnosis of Myasthenia Gravis (MG) can bring a mix of emotions and many questions. A proactive approach can help you feel more informed, prepared, and supported as you begin this journey. Because MG affects people differently, building a supportive and collaborative relationship with your healthcare team is key—you’ll work together to create a plan that fits your needs, goals, and daily life.
This guide provides important topics to consider and discuss with your doctor. Using it can help you feel more organized and confident during your medical appointments and empower you to take an active role in managing your health.
Understanding Your Diagnosis and Creating a Plan
The first step is to gain a clear understanding of your specific diagnosis. This information forms the foundation of your care plan. A strong care plan starts with knowing your MG subtype, recognizing your personal symptom pattern, and partnering closely with your healthcare team. No two MG journeys are the same, but with informed choices and a personalized plan grounded in your specific diagnosis, you can navigate MG with more confidence.
Tips for Navigating MG
Daily management strategies can play an important role in living with MG. Tracking symptoms, making lifestyle adjustments, and having a safety plan are all key components of a comprehensive approach. But remember, before making any big changes to your daily routines or how you manage MG, talk with your doctor to make sure they're right for you.
Symptom Tracking
Keeping a detailed log of your symptoms helps you and your doctor understand your condition’s patterns.
- What to track: Note changes in vision, swallowing difficulties, muscle weakness, and breathing.
- When to track: Record the time of day symptoms occur.
- Triggers: Identify activities or situations that seem to make symptoms worse.
Lifestyle Adjustments
Small changes can make a difference in managing your energy and well-being. Talk with your healthcare provider about what changes might be appropriate for you.
- Energy Management: Discuss strategies for pacing your activities to conserve energy.
- Exercise: Ask for guidance on safe and appropriate forms of physical activity.
- Environment: Learn about managing exposure to heat and stress, which can be common triggers.
- Nutrition: Inquire about dietary recommendations that may support your health.
Discussing Treatment Options
MG can be managed in several ways, and you and your healthcare provider will decide together which approach fits you best. Your care team will review your symptoms, test results, and overall health, then discuss the options with you. Together, you’ll talk through what each treatment is designed to do, how it may help, and possible side effects, so you and your doctor can make a choice that aligns with your priorities and ultimately feels right for you.
Common MG Treatments
- Target acetylcholinesterase, an enzyme that breaks down acetylcholine, an important chemical that transmits signals between the nerves and muscles.
- Target complement component 5 (C5), a protein in the immune system. In some people with MG, C5 activity can contribute to damage at the nerve-to-muscle connection. Because C5 also helps fight certain bacteria, C5 inhibitors can increase the risk of infections such as meningococcal disease.
- Have a variety of targets, including T cells, DNA/RNA replication, calcineurin, and folic acid, depending on the medication.
Learn More About Corticosteroids & Immunosuppressive Medicines
- An advanced class of targeted therapies that work by lowering levels of the autoantibodies that cause the autoimmune attack in MG.
- Target harmful antibodies in severe cases of MG.
Learn More About Plasmapheresis (PLEX) & Intravenous Immunoglobulin (IVIg)
- Surgery to remove the thymus gland, which may be associated with MG.
These treatments are commonly used in clinical practice to treat symptoms of MG but are not FDA approved specifically for this indication.
Building Your Support Network
You are not alone on this journey. Establishing a clear plan for ongoing care and connecting with others can provide valuable support. Consider bringing these questions to your next appointment and noting any actions or contacts. A simple plan—who to call, when to check in, and where to find support—can make day-to-day decisions easier.
Topics for Discussion May Include:
Follow-Up Care:
What is the recommended schedule for my follow-up visits?
Care Team:
Who are the different members of my healthcare team, and what are their roles?
Patient Resources:
What kinds of patient support programs and community resources can I turn to for reliable information and connection?
Conversation Starters to Help Guide Your
Next Doctor's Appointment
Before your next appointment, consider these key questions to discuss with your doctor.
- How was my MG diagnosis confirmed?
- What is my MG subtype (eg, ocular or generalized)?
- What is the current severity of my condition??
- What does the disease prognosis look like?
- What is my treatment goal?
- What are the expected benefits of each treatment option?
- What are the potential side effects I should be aware of?
- How might this treatment interact with my current medications or pre-existing conditions?
- What kind of monitoring will be required while I am on this treatment?
- What treatment options are available to me?
- Which of my potential MG treatments, if any, have requirements such as vaccinations?
- Who should I talk to about vaccines—my neurologist, primary care clinician, or both?
- Why are meningococcal vaccines important for maintaining more treatment options?
Key Takeaways
Receiving an MG diagnosis can feel overwhelming, but you do not have to navigate it alone. Focus on practical steps: understand your symptom patterns, communicate clearly with your care team, and discuss any changes with your doctor to ensure they're right for you. Track your symptoms, pace your energy, choose exercise and lifestyle adjustments that fit your needs, and revisit your plan regularly with your doctor as things evolve. Discuss treatment goals, benefits, and risks openly, and rely on follow-up care and support resources when you need them.
If you are considering certain types of treatment, specific vaccines may be required before beginning therapy. Not everyone with MG will need the same vaccinations. Talk to your doctor to learn which vaccines you may need, how they can help protect you, and why certain ones, such as meningococcal vaccines, may help preserve more treatment options for your MG. Your doctor can explain which vaccines are appropriate based on your treatment plan and personal circumstances. And remember: before you change any medications, routines, or lifestyle habits, talk with your healthcare team first to assess whether those decisions are right for you.
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