When you’re living with multiple sclerosis, symptoms and sensations can become a part of everyday life. In a 2020 survey of more than 1,000 people living with MS, more than half reported that their neurological symptoms made it hard to perform day-to-day activities.
Some symptoms of MS, like fatigue, might be expected — but other sensations, like electric shocks or crawling skin, may feel abnormal or downright weird. Even if you’ve experienced MS symptoms for years, you may find yourself worried about what these unusual symptoms might mean.
Symptoms of MS can vary from person to person. For instance, in the 2020 survey, more than 45 percent of participants reported having only mild symptoms, while the remaining 55 percent said that their symptoms significantly affected their daily activities.
Health professionals often categorize these common MS symptoms and sensations as:
Although people living with MS experience symptoms differently, the following are some of the unusual sensations most often described by members of MyMSTeam.
Our nerves play an important role in how we experience sensations like pain, pressure, heat, and cold. As the nerves of the central nervous system (CNS) become more damaged during the course of MS, some strange sensory sensations can result.
“I get burning sensations in my feet 24 hours a day,” one MyMSTeam member said. Another mentioned feeling “mild icy-hot sensations and some numbness.”
A third member described an almost “constant heat sensation” in the bottom of their right leg: “It feels like an iron is very close to my leg, or the heat from a magnifying glass and the sun is generating heat on my leg, or a hot iron is really close to my leg.”
Not all temperature-related sensations involve heat — some people describe cold flashes. “Since October I have been experiencing a super-cold sensation on my right side in different spots,” one member shared. “The cold sensation is so bad that it feels like it’s burning.”
With nerve damage, numbness and tingling are common and may be among the first MS symptoms to appear. More than 29,000 MyMSTeam members experience numbness. Here’s how some members have described numbness and tingly or prickling sensations:
Usually, scratching seems to relieve an itch — but for people living with MS, sometimes the itching can be so overwhelming that scratching doesn’t help at all. As one MyMSTeam member described it, “I feel itchy, like there are bugs all over me.”
MS can cause itching anywhere, but the upper body seems to be a common location among MyMSTeam members. “I just get randomly itchy all over — mostly my scalp and upper body,” commented one member. “My head is always itchy,” another said. A third member shared that the sensation even interrupts their sleep: “My head and face always itch. I even wake up now because of it.”
One of the most unusual sensations that people living with MS describe is the feeling of bugs crawling on their skin. Some MyMSTeam members get this feeling on their face. One described it as a “crazy annoyingly tingly sensation of something light, like a hair or maybe an ant, crawling on your face.”
For others, the sensation affects the torso and limbs. One member described it as “weird sensations going up and down arms and legs — the sensation of things crawling up and down them.” Another said they experience “lumbar pain and weird sensations, like crawling bugs.”
Damage to the nervous system can lead to feelings of being electrically shocked. MyMSTeam members have offered the following descriptions of these sensations:
If this sensation specifically occurs when you’re lowering your head, it may be something known as Lhermitte’s sign, a condition commonly associated with MS. With Lhermitte’s sign, an electric shock sensation spreads from the back of the bent neck to the extremities. One MyMSTeam member described it as “a sort of ‘hot flash’ — it starts on my neck and radiates down my back and arms.” Another said the symptom feels like “electrical storms in my back and going into my arms.”
When CNS nerves become damaged, tremors (uncontrollable, involuntary shaking) can develop. More than 9,000 members of MyMSTeam report experiencing tremors. One member with this symptom described feeling as though they’re “vibrating, and feeling electriclike buzzing sensations.”
One member shared their experience living with constant tremors. “I get internal tremors that last every day for a few hours,” they commented. “It feels like my whole body is jittery — like a small electrical flow.”
For other members, tremors may ebb and flow. “I have essential tremors, which get worse as the day goes on,” another shared.
A handful of conditions can cause muscle spasms and twitches, but — because of nerve damage — these sensations commonly affect people living with MS. Members of MyMSTeam have shared their experiences with this symptom:
A particular type of muscle spasm that affects the chest and torso muscles has earned itself a nickname — the MS hug. One member described the hug as “a tightening sensation throughout my body, even occasionally going down my arms.” “Sometimes, it will even squeeze around my chest and make my breathing real tight,” commented another.
Spasticity refers to an unusual increase in muscle tone, leading to stiffness or tightness. More than 16,000 members of MyMSTeam have reported experiencing spasticity, with one member describing the symptom as “the sensation of being wrapped in 4-inch-wide adhesive tape.”
“Some days, it’s just stiffness and my leg is hard to bend, and other times my leg will tremble when I first stand up,” one member shared. Another noted that leg spasticity is one of their worst symptoms. “Aside from causing head and neck pain, it has restricted breathing and caused speaking issues,” a third said.
Uncomfortable muscle sensations, such as weakness and pain, are common symptoms of MS — and can worsen the flare-ups associated with relapsing-remitting MS (RRMS). “It’s one of those days where I feel the storm of MS coming,” shared one member of MyMSTeam. “My hands are so stiff it hurts to type. My legs don’t want to work, and I can barely get out of bed.”
One member said that the sudden, painful sensations feel almost like bee stings: “I get them on my abdomen, back, and sometimes on my legs.” Others describe weakness that involves their entire body. “My legs were so weak and had weird sensations in them, and it has spread everywhere,” one said.
For people living with MS, muscle weakness from nerve damage can also lead to dysphagia (trouble swallowing). “This dysphagia is driving me crazy. I can eat but keep gagging. My throat feels like I swallowed a razor,” shared one member. Another member expressed a similar frustration: “After I eat, it’s hard to talk. And some days it’s just hard to talk at all.”
Although many of these symptoms can feel unusual or weird, they often develop as a symptom of either MS or a comorbidity (co-occurring condition) or as a side effect of medications taken for MS.
MS is an autoimmune condition in which the immune system malfunctions, causing damage to the myelin sheath that surrounds and protects the nerves of the CNS and the nerve fibers. Areas of the CNS that have been damaged by inflammation are known as lesions, and symptoms can vary depending on their location.
For example, lesions in the spinal cord are often linked to sensory or motor changes, such as increased pain sensations or trouble with motor skills. Lesions in the brainstem and cerebellum (areas of the brain) can affect the head, face, and mouth, causing symptoms like dysphagia or blurry vision.
Certain health conditions often arise in people living with MS, including some that can affect their prognosis (outlook). Some common comorbidities of MS are:
Some of these conditions can cause unusual sensations similar to those that may occur with MS. For example, the World Health Organization (WHO) reports that high blood pressure may lead to buzzing in the ears or tremors. Migraine is known to also sometimes cause paresthesia, with neurological symptoms such as tingling and numbness.
MS treatments — also known as disease-modifying therapies (DMTs) — help slow the progression of the disease so that relapses happen less often and are less severe. However, according to the National Multiple Sclerosis Society, some of these treatments can also lead to side effects that include unusual sensations, such as:
Although unusual sensations may not be cause for worry, for some people with MS, they could indicate the start of a relapse. The Multiple Sclerosis in America 2017 survey reported that tingling, muscle weakness and spasms, and pain are among the most common symptoms of MS relapse.
If you notice any new or worsening symptoms, it’s important to reach out to your doctor or neurologist. They can help determine what might be the cause and prescribe medications to help you manage these symptoms.
Although there’s no cure for MS, you can take steps at home to ease some of the uncomfortable symptoms. MyMSTeam members have offered their tips for managing daily symptoms:
Were you recently diagnosed with MS? Read Just Diagnosed With MS — Now What? 9 First Steps for some ideas on how to cope and stay organized.
MyMSTeam is the social network for people with MS and their loved ones. On MyMSTeam, more than 196,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.
Are you living with MS? Have you experienced unusual sensations like tingling or itching? Share your experience in the comments below, or start a conversation by posting on your Activities page.