Beyond the Usual: An Inside Look at Weird MS Symptoms

While many are familiar with common multiple sclerosis (MS) symptoms like fatigue, vision problems, and muscle weakness, the reality for those living with the condition often involves a bizarre and sometimes baffling array of odd manifestations.

These “weird” symptoms can be unsettling, isolating, and even comical at times, highlighting the unpredictable nature of MS.

MultipleSclerosis.net asked its community members: “Have you ever experienced what you thought was a ‘weird’ symptom and wondered if others with MS have experienced it too?” Here’s what folks had to say:

Weird neurological symptoms

The neurological impact of MS can manifest in some truly strange ways, affecting sensory perception, cognitive function, and even involuntary movements. Community members frequently describe sensations and experiences that can be difficult to articulate and even harder for others to understand.

“Sometimes I feel like my skin is crawling with ants, but there’s nothing there. It’s the weirdest feeling!”

“Has anyone else ever heard phantom sounds? Like a faint buzzing or a distant radio playing when it’s completely silent? It drives me nuts!” 

“My brain sometimes feels like it’s skipping a record. I’ll be mid-sentence and suddenly lose my train of thought completely, or words just vanish from my vocabulary for a few seconds. It’s so frustrating and embarrassing.” 

“Does anyone else get random muscle twitches in weird places? Like my eyelid will just start spasming uncontrollably for a few minutes, or my toe will twitch like it has a life of its own.”

Strange skin sensations

While numbness and tingling are often cited as common sensory symptoms in MS, the forum reveals a spectrum of far more peculiar skin sensations. These can range from uncomfortable and irritating to downright bizarre.

“I get these intense burning patches on my skin, usually on my legs or back. It feels like someone is holding a hot iron against me, but there’s no redness or anything. It comes and goes randomly.” 

“Sometimes parts of my body feel incredibly cold, like ice water has been poured on them, even when the rest of me feels warm. It’s such a strange and isolating feeling.” 

“I occasionally feel like I’m being poked all over with tiny needles. It’s not exactly painful, but it’s incredibly irritating and makes it hard to concentrate or even just relax.” 

“Sometimes my palms and fingers feel like ripples in water, I’ll look at my hands to see if they’re trying to move at all, but they’re not.”

Other strange physical symptoms

Beyond neurological and skin-related oddities, people with MS report a variety of other unusual physical symptoms that often leave them scratching their heads.

“Sometimes I feel like I can’t take a full breath, even though my lungs are fine. It’s a really scary feeling, like I’m constantly slightly winded for no reason.” 

“Food just doesn’t taste the same anymore. Sometimes everything has a metallic tang, or flavors are just muted and bland. It’s really taken the joy out of eating.” 

“It’s not just regular dizziness. Sometimes it feels like the floor is tilting or swaying even when I’m sitting still. It’s a really disorienting and unsettling feeling.”

“At one time, I could not keep my eyelids open. I was not tired, but I struggled to keep my eyelids open. Thankfully, the ability to raise my eyelids came back. Now that symptom was weird.”

How it all manifests

Ultimately, the experience of living with MS is highly personal. The combination and intensity of these weird symptoms vary from person to person. As community members in the forum express, it’s the unpredictable and often bizarre nature of these symptoms that can be particularly challenging.

“It’s like my body has a mind of its own. One day it’s the crawling skin, the next it’s the phantom buzzing, and then my leg just decides it doesn’t want to work properly. You never know what weirdness is going to show up next.”

“The hardest part is trying to describe these things to people who haven’t experienced them. They just look at you like you’re crazy. This forum makes me feel less alone in all this weirdness.”

“It’s definitely strange sometimes, and I’ve learned to expect the unexpected. But you know what? We adapt. We find ways to cope, and we support each other through all the weird and wonderful things MS throws our way.”

Do you have a strange symptom? See what over 1,700 people have shared as their strange symptoms in our ‘Weird MS Symptoms’ forum.