Myasthenia gravis (MG) is a chronic rare autoimmune, neuromuscular disease.
Generalized myasthenia gravis (gMG) is a more severe form of MG that causes severe muscle weakness throughout the body.
gMG patients experience a number of symptoms that make it difficult to conduct their everyday routines. These symptoms may include:*
- Weakness of the eye muscles (ocular myasthenia)
- Drooping of one or both eyelids (ptosis)
- Blurred or double vision (diplopia)
- Changes in facial expressions
- Difficulty swallowing
- Shortness of breath
- Impaired speech (dysarthria)
- Weakness in the arms, hands, fingers, legs, and neck
Tracking Your Symptoms
It’s important to track your symptoms as you experience them before and during treatment with ZILBRYSQ. This will help you communicate more effectively with your healthcare provider and develop your treatment plan.
You can use the MG-ADL to track your gMG symptoms.
*This list of symptoms is commonly associated with gMG but may not be a complete list.
MG-ADL=Myasthenia Gravis Activities of Daily Living scale.
You will find that many gMG symptoms impact your everyday life. Small adjustments to your routine could make it easier to manage these symptoms.
For example:
- Choose an easy-to-manage hairstyle.
- Use an electric toothbrush.
- Buy lightweight, comfortable shoes.
- Bring your own cart to take items from the grocery store to your car.
- Buy a cane to use when you’re feeling tired.
- Consider automatic appliances.
- Buy items in lightweight, easy-open containers.
- Use lightweight, easy-to-handle plates and dinnerware.
- Install grab bars in your shower and bath.
- Use a shower head on a flexible hose.
- When working on screens, schedule time to rest your eyes.
- Schedule naps throughout your days.
- Keep your home free of clutter to avoid falls.
- Put a chair in bathroom so you can sit while washing up.
You may not understand some of the things your healthcare provider says. It’s okay to ask for clarification: The more you know, the better, and your questions are always important.
If you aren’t feeling confident asking for clarification, here some useful phrases to remember if your healthcare provider says something you don’t understand.
QUESTIONS YOU CAN ASK:
What do you mean when you say...?
I don’t know what
___________means.
I’m not following.
Can you explain that differently?
Could you repeat that?
I didn’t really understand what you meant by...
Speaking the gMG Language
Talking about your gMG isn’t always easy. Your healthcare provider may use terms you don’t understand. Use this glossary to learn new terms that your healthcare provider may use when discussing gMG:
Acute
Acute – Symptoms that begin quickly and only last a short amount of time. With gMG, some of your symptoms may be acute and others may be chronic.
Autoimmune disease
Autoimmune disease – Your immune system protects your body from infection and disease. An autoimmune disease is any disease that causes your immune system to attack your body, instead of protect it.
Complement system
Complement system – A part of your immune system that helps your immune cells protect your body.
Dysarthria
Dysarthria – A speech disorder in which speech-producing muscles are damaged or weakened, causing slurred and slow speech.
Dysphonia
Dysphonia – A voice disorder that results in difficulty speaking easily or clearly. Occurs due to muscle weakness caused by gMG.
Fluctuation
Fluctuation – A change in muscle strength.
Myasthenic crisis
Myasthenic crisis – An emergency caused by gMG wherein the muscles used to breathe suddenly weaken, potentially leading to respiratory failure.
Ptosis
Ptosis – A droopiness of the upper eyelids.
Antibodies
Antibodies – A part of your immune system that detects and attacks invading proteins.
Chronic
Chronic – Any disease or symptom that is long-lasting and persistent. Chronic symptoms present themselves over a long period of time. With gMG, some of your symptoms may be acute and others may be chronic.
Diplopia
Diplopia – Also known as double vision, diplopia is a gMG symptom that causes you to see two images of a single object.
Dysphagia
Dysphagia – Difficulty swallowing.
Exacerbation
Exacerbation – Any short-term worsening of symptoms.
Immune system
Immune system – Your body’s system that protects it from foreign invaders.
Neuromuscular junction (NMJ)
Neuromuscular junction (NMJ) – The place where your nerves and muscles meet in your body. When the NMJ is destroyed, your muscles get weaker.
Uncontrolled
Uncontrolled – A condition wherein your gMG is not well-managed. Common signs of uncontrolled gMG include:
An MG-ADL score of 6 or higher. Symptoms including the following that greatly
impact your everyday quality of life: Ongoing weakness; problems speaking, chewing, or swallowing; drooping eyelid; difficulty breathing; difficulty with everyday activities like brushing your teeth. Symptoms that require constant treatment changes or increases in dosing.