Multiple sclerosis (MS) is a neurological condition that can send odd, uncomfortable, and sometimes painful signals between the brain and the body. Besides causing common symptoms like muscle spasticity, the MS hug, numbness and tingling, and fatigue, multiple sclerosis can sometimes lead to some puzzling sensations. One MyMSTeam member asked, “Does anyone have a sensation of a cold stream of water running down your leg?”
If you have MS, it’s helpful to know that the central nervous system symptoms of MS encompass a wide range of issues, including altered sensations. Here, we explore possible explanations for these types of sensations and how you can manage the effects.
Many members of MyMSTeam describe altered sensations, often called paresthesia, such as burning, itching, and buzzing. One member said, “I have the feeling of a sock on my leg, numbness and tingling at times, but sometimes it feels like a stream of cold water is running down my calf to my heel.”
Another described a similar sensation: “I get the cold water sensation as well! I used to think I peed myself.”
Neuropathic pain (nerve pain) is not the same for everyone. “I do get the feelings of having socks on both legs along with the tingling, buzzing, and vibrations,” one member explained, “as well as the feeling of my feet on fire.”
People with multiple sclerosis who experience paresthesia have described a wide range of sensations, including:
If you have experienced sensations like those and then looked at your skin, you probably saw nothing out of the ordinary.
Think back to when you experienced one of those sensations. Was it painful? What set it off? How did it go away? If you know your triggers — such as wind or physical touch — you may be able to avoid setting off MS paresthesia in the future.
Someone with MS might experience the sensation of cold, wetness, or trickling because of nerve damage — MS disrupts the nerve signals that carry sensory information between the brain and spinal cord. Lesions form on the protective layer around each nerve cell (the myelin sheath), which means the nerves may be more prone to sending random signals to the brain. Your brain cannot distinguish these false alarms from more familiar external sensations, such as the feeling of cold water streaming down your leg. Therefore, you may feel these sensations for no apparent physical reason at any random moment.
In one study, researchers reported that about half of participants with MS — regardless of the severity of their condition — experienced some sort of abnormal sensation. In another study of people living with MS, 8 percent had experienced painful altered sensations — also called dysesthesia — in the past six months, according to the Multiple Sclerosis Trust.
You can take steps to reduce the impact of these altered sensations on your life.
Paresthesia is more likely to arise during an MS flare, when MS nerve damage has its greatest effects. Speak with your doctor or another health care provider about all your symptoms, including specific neuropathic pain. Using this information, you can work with your health care team to create a treatment plan best suited to your unique health needs.
For example, disease-modifying treatment can help stop MS disease progression, and nonsteroidal anti-inflammatory drugs (NSAIDs) can reduce inflammation and pain. During MS attacks, your neurologist may prescribe drugs like corticosteroids and plasma exchange treatment. These medications and procedures should help reduce many of your MS symptoms, including paresthesia.
Nonpharmaceutical, at-home solutions for managing neuropathic pain include applying hot or cold packs to overcome the sensation or at least distract from it until it goes away naturally.
Consider practicing mindfulness meditation, a type of mental training that has been linked to a greater awareness and control over one’s physical sensations.
Physical activity has also been shown to reduce MS paresthesia. Not only did an eight-week yoga and aquatic exercise program reduce MS-induced paresthesia for a group of 54 women with MS, but it also reduced fatigue and boosted their quality of life.
Finally, take care of your mental health, as anxiety and depression have been linked to a worsening of MS symptoms. Don’t hesitate to seek out counseling if you need it. It’s important to keep your MS team notified of all of your symptoms, whether or not they cause you pain.
Always remember that you are not alone on your MS journey. As one member said about paresthesia: “It’s all totally normal! It happens to most of us, promise!” Continue to seek support from your MS community — recognizing strange sensations as symptoms of MS is the first step to dealing with them.
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 193,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.
Have you experienced altered sensations while living with MS? What advice do you have for other people living with MS who have neurological problems? Share your tips and experiences in a comment below or on MyMSTeam.