When you have myasthenia gravis (MG), something as simple as sticking out your tongue at the doctor’s office can become a challenge. This autoimmune disease can affect muscles throughout your body — and your tongue is no exception.
“My diagnosis started with double vision and weakness in my mouth. I couldn’t use my tongue, chew, or eat,” an MGteam member shared.
MG damages the neuromuscular junction (NMJ), the point where nerves connect to muscles. Specifically, abnormal immune system proteins attack the NMJ, making it hard for muscle cells to receive messages from the nerves. This leads to muscle weakness.
About 15 percent of people with MG have symptoms involving the muscles in the neck, jaw, throat, and tongue. This creates difficulties with swallowing, speaking, and chewing. Doctors call these “bulbar symptoms.” MG can cause a variety of issues with your tongue. This article explores how MG can impact your tongue and signs to look out for.
One of the primary ways MG affects your tongue is by causing palatal weakness, or muscle weakness in the back of the roof of the mouth. Palatal weakness may make it hard to:
Over time, tongue weakness can lead to having a nasal voice. Known as dysphonia, this voice disorder occurs in about 2 percent of those with MG.
Studies show that slurred speech, known as dysarthria, affects as many as 60 percent of people with MG. The severity can range from mild pronunciation issues to significant speech impairment.
If you have dysarthria:
The medical term for difficulty swallowing is dysphagia. When you have dysphagia, you may have trouble moving food around in your mouth or notice a sensation that food is stuck in your throat.
These issues may be more than simply annoying. Swallowing difficulties can become dangerous if food or liquid enters your airway, leading to choking or pneumonia. If it’s too difficult to eat, you may even become malnourished or lose too much weight.
Some MGteam members have found relief from swallowing difficulties with simple over-the-counter remedies, such as cough drops. “I get a really dry mouth and find it hard to swallow,” an MGteam member said. “A friend suggested cherry cough drops. They taste good, and the taste lasts for a long time. It’s helped me a lot.”
In some cases, long-term MG can lead to tongue atrophy, where the tongue muscle shrinks or wastes away. Tongue atrophy is a common type of muscle atrophy for people living with MG.
If you experience tongue atrophy, you may notice wrinkles (furrows) appear on your tongue’s surface. These are caused by prolonged tongue weakness.
Fasciculations are small, involuntary muscle twitches. These twitches can occur in any muscle, including the tongue. Rarely, MG may cause tongue twitching. This may be more common among people with a type of MG called muscle-specific kinase (MuSK) antibody-positive MG.
One study showed that a small percentage of people with MG reported changes in how food tastes, compared to people without MG. While not directly caused by tongue weakness, this change is thought to be related to how MG affects the nerves that control taste buds. The study noted that people who reported taste disorders also had thymoma (a tumor of the thymus gland). The most common taste problem people reported was losing the ability to taste sweetness.
Just like other muscles affected by MG, your tongue can become fatigued with use. For example, your tongue may feel tired after eating or talking. You might notice this muscle weakness worsens as the day goes on. Rest often helps improve symptoms.
It’s thought that tongue fatigue is a common symptom of MG. Since the tongue is used consistently throughout the day for eating, drinking, and speaking, tongue weakness can significantly impact quality of life.
It’s important to let your MG specialist know if you experience new or worsening symptoms in your tongue. Some symptoms can be life-threatening (such as choking or pneumonia). Others can affect your nutrition and weight and also make it hard to enjoy socializing or eating. It’s vital to get proper treatment. Your neurology team can help make sure your treatment plan addresses all of your needs.
MGteam is the social network for people living with myasthenia gravis and their loved ones. On MGteam, members come together to ask questions, give advice, and share their stories with others who understand life with myasthenia gravis.
Have you noticed any of these symptoms of myasthenia gravis affecting your tongue? Do you have any advice for others? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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