UNDERSTANDING UNCONTROLLED gMG
As a chronic, autoimmune, neuromuscular disease, myasthenia gravis (MG) is a condition that may be present in your life for years.
Generalized myasthenia gravis (gMG) is a more severe form of MG and may result in unpredictable symptoms that cause weakness throughout
your entire body.
There are many people living with uncontrolled gMG who may be experiencing unpredictable symptoms that impact daily life. Learn how to recognize the signs of uncontrolled disease, then be sure to have a conversation with your doctor about your day-to-day experiences.
What is uncontrolled gMG?
Watch the video to see what uncontrolled gMG means, and hear from others living with the condition.
Myth
gMG is well controlled for many people on treatment
Fact
For around half of the people living with gMG, their disease remains uncontrolled, meaning that they can experience debilitating chronic symptoms that impact daily life—even if they're on treatment
Myth
Exacerbations happen very rarely
Fact
Almost half of people experience an exacerbation (an acute worsening of symptoms) over a 6-month period
Myth
gMG is predictable and has only a minor impact on daily life
Fact
gMG can be unpredictable.
The symptoms can vary by the person, day, or hour—greatly impacting daily life
gMG CAN FEEL UNPREDICTABLE
The two phases of gMG
Initial
~2-3 years
After being diagnosed, symptoms typically worsen, reaching their peak within the first 2 years. But for 1 in 5 people, worsening symptoms may continue after 2 years.
Continual
After the initial stage, people may continue to experience unpredictable and serious symptoms.
Symptoms can feel unpredictable
If your gMG is uncontrolled, the unpredictability of this disease may always feel present. Sudden fluctuations and crises that cause hospitalization are important to keep track of and discuss during your regular doctor visits- alerting your doctor of any changes to your condition is important.
gMG symptom fluctuations can be spontaneous, changing by the person, day, or hour.
2 out of 10 people with gMG may experience a myasthenic crisis that may require hospitalization at least once during their lifetime.
Triggers can feel unpredictable
gMG symptoms can worsen suddenly, caused by triggers beyond your control.
Triggers may include:
- Mental or physical stress
- Changes in weather
- Infections
- Certain drugs
- Vaccinations
People with gMG sharing their experiences during an international patient experience study
Whenever I think about joining in on strenuous activities with friends, I'm never sure how far I'll make it.
Turns out stress is my main trigger, and it's what caused those first symptoms to show up.
WHAT IS MG?
WHAT CAUSES gMG?
gMG is caused by abnormal antibodies that attack the neuromuscular junction (NMJ), where nerves and muscles meet, and damage it.
Antibodies are an important part of a healthy immune system that attack harmful bacteria or viruses and protect us against infection. In gMG, the body produces abnormal antibodies that wrongly attack the NMJ and cause damage.
TRACKING YOUR gMG SYMPTOMS
During your regular appointments, your doctor may use various assessment tools to see how your symptoms are impacting your daily life.
Two frequently used assessments:
Myasthenia Gravis Activities of Daily Living (MG-ADL) Scale
The MG-ADL scale is a simple questionnaire that includes 8 symptom categories and is used to determine which symptoms impact you the most.
The MG-ADL scale enables you to share your unique experience with your doctor so they can get a clear picture of your gMG over time.
Quantitative Myasthenia Gravis (QMG) Score
Your doctor may also assess your gMG symptoms through a quantitative myasthenia gravis (QMG) assessment. While the MG-ADL is self-reported, meaning you answer the questions, the QMG should be done by your doctor. It is a questionnaire that includes 13 symptom categories to test your physical function and muscle strength. Keep in mind that testing your physical function will include simple activities like swallowing water or stretching your arms and legs.