Myasthenia gravis (MG) is sometimes called the “snowflake disease” because each case is unique, with symptoms that vary from person to person. For example, MG can affect different muscles in different people, hence its symptoms can vary widely. Bulbar symptoms of MG — muscle weakness in the head, neck, and jaw — are one example. Around 15 percent of people with MG develop bulbar symptoms early in their condition.

The bulbar muscles are named after the nerves near the top of the spinal cord, which looks like a bulb. Read on to learn more about different bulbar symptoms and how they can show up in MG.

Who Experiences Bulbar Symptoms With MG?

Researchers can’t predict which symptoms of MG a person will experience. However, they do know a few things about who is more likely to have bulbar symptoms.

People with MG who test positive for abnormal immune system proteins known as muscle-specific kinase (MuSK) antibodies have a higher risk of experiencing bulbar symptoms. Your doctor may test for these proteins during blood tests used to diagnose MG. You may also be more likely to have bulbar symptoms if your MG is diagnosed later in life. The reason for this association with later-onset diagnosis is not yet fully understood.

On the other hand, bulbar symptoms are less common in people with a type of MG called seronegative. This means that standard blood tests don’t detect the typical antibodies such as MuSK antibodies and acetylcholine receptors (AChR) antibodies that we know are connected to the condition. Although these individuals don’t have detectable antibodies, they still have MG.

Trouble Talking

Bulbar symptoms often cause a person’s voice to change. Their speech may become quieter and sound slurred, and it may also take on a nasal quality or become hoarse. Some people may have trouble pronouncing certain sounds, and they may also begin to stutter. Difficulty with talking is also known as dysarthria.

Struggles with speech related to MG likely come from muscle weakness that affects the jaw and the tongue. If the affected muscles in your mouth can’t move the way they’re used to, it will be harder to form words. Weakness in the throat that affects that voice box may also affect how loud you can speak.

Problems Chewing

People living with bulbar MG may also struggle with chewing. Chewing difficulties can also make swallowing harder. If someone has trouble chewing and tries to swallow large bites, it can lead to serious problems.

The jaw muscles play an important role in chewing. If they become too tired, it can be hard to chew properly or finish a full meal. You might be able to chew for a few minutes, but not long enough to eat the amount of food needed to stay nourished.

Issues With Swallowing

Some people diagnosed with bulbar MG may also have dysphagia, which means trouble swallowing. It may also be difficult to drink or even swallow saliva.

Swallowing problems in MG happen because of weakness in the tongue and throat muscles, which are needed for this process. They can lead to choking or coughing whenever you try to eat or swallow.

Increased Risk of Pneumonia

People living with bulbar MG run the risk of developing pneumonia. When you can’t chew and swallow your food well, both particles and fluid are more likely to end up in your lungs. If left untreated, this can cause pneumonia. Pneumonia is both a potential trigger for worsening MG symptoms and a common cause of death among people with MG. Pneumonia is a serious risk, but with careful management and strategies to improve swallowing safety, it can often be prevented.

If you're struggling with chewing and/or swallowing, it’s important to use strategies to eat more safely and avoid this life-threatening complication. Using certain techniques can make it less likely that you’ll inhale your food. For example, you can try taking smaller bites, thickening liquids, and practicing swallowing exercises. Some of these tips may also help you eat more so you get plenty of calories and other nutrients to feel your best and maintain a healthy weight.

Struggles With Holding Up the Head

Bulbar MG can also make it hard to hold up your head, which can limit daily activities. If this happens, you may need to lie down often or use a chair with neck support. This is because the muscles in your neck and skull become weak. With around than 30 muscles in this area, even a little weakness can make it difficult to keep your head upright.

Talk to Your Doctor

If you’ve been diagnosed with MG and you’re experiencing new bulbar symptoms, or if you’re having these symptoms without a diagnosis, it’s time to talk to your neurology team right away.

Because MG is often a progressive autoimmune disease, new bulbar symptoms may mean that the disease is affecting your body in new and different ways. It can signal disease progression or the involvement of additional muscle groups. If this is the case, you and your neurologist will need to figure out what that means about the management of MG. They may recommend changes to your current treatment, additional therapies, or assistive devices to help manage symptoms.

On the other hand, MG symptoms can vary from one day to another, and sometimes even from hour to hour. You may find that certain triggers, like stress or illness, cause bulbar symptoms that you don’t experience the rest of the time. If this is true, it’s still important to let your doctor know.

Even if you haven’t been diagnosed with MG, these symptoms mean you need to see a doctor. Difficulty swallowing or speaking can be serious, so early evaluation and treatment are important. Your doctor can help determine what’s causing these symptoms. Whether it’s MG, a different autoimmune disorder, or something else, they can help you get the right care.

Find Others Who Understand

MGteam is the social network for people with myasthenia gravis and their loved ones. Members come together to ask questions, give advice, and share their stories with others who understand life with MG.

Have you experienced MG bulbar symptoms? How do they affect your life? Connecting with others who understand MG can be very helpful. Consider joining a support group or online community. Share your experience in the comments below, or start a conversation by posting on your Activities page.