From inappropriate outbursts of laughter to difficulty swallowing, I’ve been experiencing a range of symptoms that I’m now finding treatments for.
Living with multiple sclerosis (MS) for the past 18 years, I’ve become accustomed to managing a range of common symptoms, like numbness and fatigue. Since I was initially diagnosed with relapsing-remitting MS (RRMS), my symptoms often came and went, and then while I was in remission, I’d barely have to deal with or even think about them.
Eventually, however, my disease advanced and in 2020, I was diagnosed with secondary progressive MS, a more advanced stage of this developing illness. By this point, I thought I was relatively familiar with the MS disease process and its symptoms.
Recently, however, I realized that I’ve experienced certain sensations during the past few years that I never connected to my condition — until I learned about some not-so-commonly discussed symptoms that are more prevalent in more advanced types of MS. I had previously dismissed these unexpected symptoms as if they were weird quirks of mine without really acknowledging them as potential MS symptoms.
I took this discovery to my neurologist, and he confirmed that these surprising symptoms are indeed part of my MS. Perhaps you’ve experienced one or more of these too.
One time when I was watching a movie in a completely quiet, pitch-black cinema, I suddenly found myself choking while taking sips of soda. Coughing profusely, I couldn’t quit the hacking and, gasping for air, I desperately ran out of the theater. The same thing occurred at home sometimes when I drank iced water, and then I noticed it happening more and more.
At first, I attributed it to drinking liquids too quickly or maybe drinking something that may have been too cold. But then I learned that dysphagia, or difficulty swallowing, affects 45% of people with MS, a significant percentage of us. It occurs due to disruptions in the neural pathways that control the muscles of the mouth and throat that are involved in swallowing.
Other symptoms of dysphagia can include tongue weakness, frequent throat clearing, dry mouth, and bad breath. If it gets serious, dysphagia can lead to food or liquid entering the airways or lungs. This is called aspiration and could lead to pneumonia.
If you’re experiencing any of the above symptoms, consult with a speech-language pathologist (SLP), who can perform different types of assessments to determine which treatment strategies will work best for you. For example, they may advise you to eat smaller, more frequent meals; to thicken your beverages; avoid dry and crumbly food; or even position your head in a certain direction. They may also teach you exercises to strengthen the muscles used for swallowing.
I noticed my peepers involuntarily darting back and forth — left, right, left, right. I assumed my eyes were just tired from focusing on my electronic devices for extended amounts of time. Maybe it was the blue light from my phone and laptop.
I figured I could simply spend less time in front of a screen to reduce strain on my eyes, but I later learned that this rapid flickering of the eyes is actually an MS symptom called nystagmus. This erratic movement of the eyes happens because of impaired control of the eyes’ muscles and may be due to damage to the brainstem, the region of the brain that controls vision, muscle control, and balance.
Sometimes, nystagmus can be so mild that it’s almost undetectable to the person who has it, but it can be clearly noticed by an observer. It can affect about 13% of people with MS. It can contribute to vertigo or nausea, and also make it challenging to hold a steady gaze. Nystagmus can contribute to falls, especially if combined with balance issues.
Various treatments and therapies can help manage this symptom and improve visual stability, such as wearing glasses or contacts — they may help slow down the eye movement but won’t stop it altogether — or taking medications to help reduce eye twitching.
It’s happened to me more times than I can remember. Someone tells a joke. The crowd giggles, and the laughter dies down after a few seconds. Except it seems I find the punchline funnier than everyone else, and my chuckle turns into howling, which in a few seconds becomes a roaring fit, then a few minutes later I’m continuously heaving in a hysterical bout of cackles I can’t control. My eyes tear up, my face is flushed with embarrassment, and I run out of the room exasperated.
It was always confusing and embarrassing, and I had no clue these uncomfortable stints were due to the MS symptom called pseudobulbar affect (PBA), which results in sudden episodes of laughter or tears that seem disproportionate to the situation. Sometimes there’s not even a trigger (like someone telling a joke).
PBA is often mistaken for depression or mood swings.
It may occur due to disruptions in the neural pathways that regulate emotions. While estimates of the number of people with MS who experience PBA have varied widely, a recent study found that it probably affects 7–11% of people with the disease. Treatment options, such as medications and counseling, can help manage PBA and provide emotional stability.
From time to time, right in the base of my skull, a sudden electric shock-like sensation radiates down my neck and into my spine. It lasts just a few seconds, but this shooting ache makes me clench and writhe in pain. I remember it happening to me even before I was diagnosed with MS. This has been happening to me for so long that I never considered it may be related to MS.
It’s called Lhermitte’s sign (pronounced “lair-meets”) and is colloquially known as “MS zingers.” It occurs due to damage to the myelin sheath in the spinal cord, resulting in the misfiring of sensory signals.
These zaps feel like electric shocks or uncomfortable buzzing and can be triggered by a bend in your neck, a cough, a yawn, or a sneeze. Up to one-third of people with MS may experience this symptom, and while there’s no specific treatment for Lhermitte’s sign, managing underlying MS symptoms, reducing stress, and practicing good posture can help reduce its occurrence. Stretching and relaxation practices can support decreasing these pangs, too.
While these symptoms may initially catch us off guard, it’s important to remember that MS affects each person differently. It’s crucial to communicate any new or unusual symptoms to your healthcare team for accurate diagnosis and appropriate management strategies.
Living with MS for almost 2 decades has taught me that the journey can have unexpected and unpredictable moments. Discovering the surprising symptoms that were connected to my condition has been both enlightening and empowering, especially because I feel more secure in knowing why these sensations are happening.
By seeking medical guidance and exploring various management approaches, I feel better equipped to navigate these symptoms and live a fulfilling life with MS.
Medically reviewed on October 02, 2023
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