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Newly Diagnosed

 

"I have myasthenia gravis? What does that mean?"

If you or a family member has been diagnosed recently with MG, that question may echo in your head. How can you get a handle on the answer?

  • Learn about MG. You’ll want to know about the disease, what symptoms to look for, and how MG can affect your daily life. Click below for these resources:
  • Talk to someone who understands. Call the MGF of Illinois office with questions and concerns. Our support groups meet several times a year in Chicago-area locations, Springfield and the Quad Cities area. We also sponsor two educational meetings a year.
  • Research treatment options. Read through the “Treatments” section of this Web site. It helps to know about medicines used to treat MG, surgical approaches and other therapies.
  • Learn the lingo. Your doctor might use words new to you when talking about the disease and your symptoms. Click here for glossary.
  • Keep track. Get a small pocket calendar or notebook. Identify which symptoms appear when, how long they last, and what events might have triggered them. Track when you start or stop a particular medication or change dosages. Bring this information when you’re visiting doctors, dentists and eye specialists. Use it to discern what worsens your MG, or how long it takes to bounce back from certain events.
  • Be prepared. In case of emergency, carry a wallet card that identifies your illness. Keep a list of your current medications in your purse or wallet at all times. And carry a list of drugs that myasthenics should avoid. Make sure someone other than yourself knows about your illness and where you keep your medication.
  • Decide who to tell. You’ll want to tell close friends and family members about your MG. Depending on the severity of your illness, you may need their help rebalancing home duties, getting to doctor visits, and moral support.

    Beyond this inner circle? Ask why they need to know. For example:

    • If you’re in school, school administrators should understand your condition. Are there times when you lack the stamina for gym class or can’t manage stairs? Do you need help carrying your books?
    • If your symptoms could affect your work, you may want to explain that you have a medical condition. Can you identify accommodations that would help you, like a nearby parking space or computer adaptations to ease eye strain? Be honest, and be responsible about identifying what you can and cannot do.
    Keep in mind that most people have never heard of myasthenia gravis. Be prepared for puzzled looks, curiosity, mispronunciations, and comments that range from "but you look fine" to "I’m so sorry." A sense of humor comes in handy.

Unless otherwise stated, the information provided here is of a general nature, composed by non-medical personnel. It is meant to be accurate and helpful advice for MG patients. It is not intended to be medical opinion, nor is it a substitute for personal professional medical care.