Myasthenia gravis (MG) is a chronic rare autoimmune, neuromuscular disease.
Generalized myasthenia gravis (gMG) is a 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, during, and after a RYSTIGGO treatment cycle.This will help you communicate more effectively with your doctor 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 doctor 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 doctor says something you don’t understand.
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 doctor may use terms you don’t understand. Use this glossary to learn new terms that your doctor may use when discussing gMG:
Acute
– Symptoms that begin quickly and only last a short amount of time. With gMG, some of your symptoms will be acute and others will be chronic.
Autoimmune disease
– Your immune system protects your body. An autoimmune disease is any disease that causes your immune system to attack your body, instead of protect it.
Complement system
– A part of your immune system that helps your immune cells protect your body.
Dysarthria
– A speech disorder in which speech-producing muscles are damaged or weakened,causing slurred and slow speech. Dysarthria is a common symptom of gMG.
Dysphonia
– Occurs due to muscle weakness caused by gMG, resulting in difficulty speaking.
Fluctuation
– A sudden change in muscle strength.
Myasthenic crisis
– An emergency caused by gMG wherein the muscles used to breathe suddenly weaken, potentially leading to respiratory failure.
Ptosis
– A droopiness of the upper eyelids; a common symptom of gMG.
Antibodies
– A part of your immune system that detects and attacks invading proteins.
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 will be acute and others will be chronic.
Diplopia
– Also known as double vision, diplopia is a gMG symptom that causes you to see two images of a single object.
Dysphagia
– Difficulty swallowing; a common symptom of gMG.
Exacerbation
– Any short-term worsening of symptoms.
Immune system
– Your body’s system that protects it from foreign invaders.
Neuromuscular junction (NMJ)
– The place where your nerves and muscles meet in your body. When the NMJ is destroyed, your muscles get weaker.
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 TOP teeth. Symptoms that require constant treatment changes or increases in dosing.