About one-third of people diagnosed with multiple sclerosis (MS) experience dysphagia, or difficulty swallowing. People with dysphagia can experience uncomfortable symptoms, including choking, coughing, feeling as though food is stuck in their throats, and needing to frequently clear their throat when eating or drinking. It can also result in serious complications, including aspiration — inhaling solid food or liquids into the windpipe.
“If I survive drinking my first glass of water in the morning I know it will be a good day!” wrote one member of MyMSTeam.
Although dysphagia is more common in people with advanced MS, it can occur at any time in the disease’s progression. It is important to recognize swallowing difficulties as early as possible, so talk to your neurologist if you start having trouble with eating or drinking.
Dysphagia is the clinical term for any difficulties with swallowing function. Some people with dysphagia are unable to swallow at all, whereas others have difficulty swallowing only certain foods or liquids.
Signs and symptoms of dysphagia include:
Many people with MS who experience swallowing problems also have changes in their speech. Let your health care provider or a neurology expert know if you experience difficulty swallowing or notice any changes in your speech.
In people with MS, the body’s defenders (white blood cells) attack the central nervous system, causing inflammation and stripping the nerves of their protective coating (myelin). MS results in areas of nerve damage known as lesions or plaques.
MS plaques can form on the brain stem and interfere with nerve signals between the brain and the muscles in the tongue and throat. Nerve damage to these muscles causes them to become weak and uncoordinated, leading to swallowing problems. Some people with MS may also experience numbness in the mouth or throat, which can likewise cause difficulties with chewing and swallowing.
Swallowing disorders can lead to serious complications. Inhaling liquids or solids into the airways can result in a chest infection, known as aspiration pneumonia. Long-term dysphagia can also contribute to weight loss, malnutrition, or dehydration. Dehydration can put a person at risk of developing a bladder infection.
The impacts of dysphagia can also be more abstract. Having difficulty swallowing may make you more self-conscious when eating and drinking in front of others. You may avoid social interactions that involve meals or limit yourself to restaurants that serve food that likely won’t pose a challenge to swallow. One MyMSTeam member shared that their swallowing problems make them “sad and nervous.”
If you are self-conscious about dysphagia, it may help to explain to your loved ones that you are not “fussy” — swallowing impairment is just one of the MS symptoms you experience.
Many MyMSTeam members have shared their experiences with swallowing problems with multiple sclerosis. “I have trouble swallowing,” wrote one member. “It only happens to me at night so far. It’s like I forget how to swallow, and I have to grab my water bottle to actually swallow, then I’m okay. But it’s pretty scary — it’s like I could choke.”
Other members have had similar experiences. One wrote that they are constantly choking on their own saliva and “waking up choking, as well.”
Another found that they have issues in which it “feels difficult or tight to swallow.”
Some members find that foods they usually had no trouble with now pose a significant challenge to eat. “I was eating an apple, and the juice had me choking. I just kept coughing and coughing. … It’s like simple things having me choking,” one member shared.
If you have problems swallowing, a speech and language pathologist may be able to diagnose dysphagia by examining your tongue and swallowing muscles. Several other tests, including a modified barium swallow, can also be used to assess your swallowing function and the strength of your swallowing muscles. This test, also known as a swallowing study or videofluoroscopy, monitors the movement of barium through the esophageal tract.
Dysphagia can be managed by making adjustments to your diet and eating habits to help make chewing and swallowing easier and to prevent potential risks, such as aspiration. Speech and occupational therapists can also recommend exercises to help improve your ability to swallow.
Many people with MS find that altering the consistency of solid foods and liquids is helpful in improving their swallowing function. Some find thickening their drinks and eating softer foods to be helpful. You may prefer to avoid foods that are difficult to chew and swallow, such as dry, crunchy, crumbly, or sticky foods. It may also be helpful to slow down while eating and drinking and to take smaller bites or sips. “I choke on my food, so I eat slowly and cut everything up into small pieces,” shared a MyMSTeam member.
If you have trouble swallowing, the following tips may help make mealtime easier:
It may also be helpful to take note of what types of foods cause you particular difficulty when chewing or swallowing and avoid or cut down on them.
A speech-language pathologist can help retrain a person to swallow safely by ensuring that their head and neck are in the correct posture while swallowing. Speech and occupational therapists may also recommend swallow strengthening exercises. These exercises can be performed at home and can help improve swallowing in a number of ways, including building muscle strength and control and improving the contact and coordination between the different muscles involved in swallowing.
If a person has significant difficulty swallowing, they may be at risk of becoming dehydrated or malnourished. If other approaches to managing swallowing problems don’t work, direct liquid feeding may be used. Direct liquid feeding involves delivering liquid food through a thin nasogastric tube down the esophagus into the stomach via the nose, bypassing the need for chewing and swallowing. Nasogastric feeding is a short-term treatment that usually lasts no longer than three or four weeks.
If a person continues to have severe difficulties with swallowing, a percutaneous endoscopic gastrostomy (PEG) may be used. PEG involves delivering liquid food through a tube directly to the stomach.
MyMSTeam is the social network for people with MS and their loved ones. Here, more than 164,000 members from across the world come together to ask questions, provide support, and share stories of daily life with others who understand.
Have you had problems with chewing or swallowing? What ways have you found to manage them? Share your tips with others in the comments below or by posting on MyMSTeam.