Some aspects of multiple sclerosis (MS), such as muscle spasms and fatigue, are talked about often. However other symptoms are not commonly discussed.
To find out more about the people who experience those symptoms, we reached out to the MultipleSclerosis.net Facebook community. We asked, “What are the MS symptoms that no one ever talks about?”
The community was inspired by this topic – nearly 200 community members responded! Here are some of the lesser-known symptoms they shared.
Itching and burning
MS affects the central nervous system, which causes a wide range of neurological symptoms. This can include the constant sensation of itchiness. Many people describe this as a “pins and needles” feeling that comes on randomly.
“Random itching for no reason and the feeling that bugs are crawling on me. It is absolutely unsettling.”
“Burning sensation on my legs. This sometimes feels like my legs are on fire. This also feels like I am stepping on pins and needles.”
Decrease in sense of sight
Blurry vision or a decrease in vision can be one of the first symptoms of MS. This problem often stems from optic neuritis, which is inflammation of the optic nerve.1
“Also, my vision is wonky as hell only when going downstairs!”
“The constant blurry vision and hearing that goes in and out.”
For many people with MS, facial paralysis was the first symptom they experienced. For others, it showed up several years after they were diagnosed. Regardless of when it shows up, it happens because of damage to the facial nerve or to the part of the brain that controls your facial muscles.2
“Sometimes my lips feel numb. Also, I bite inside my mouth when eating.”
“Half of my face feels like someone rubbed Icy Hot on like moisturizer. Only half is ever affected, but it happens on either side.”
“I have trouble swallowing without choking sometimes.”
It makes sense that bladder issues are not talked about due to their sensitive nature, but they are common MS symptoms. The good news is that they can be treated with medicines and fluid management.1
“I hardly tell anyone about the bowel and bladder problems I have.”
Depression and anxiety are common among people living with MS. Irritability can also be likely, which makes sense given how much someone with MS deals with 1
For some people, talk therapy can prove helpful as an outlet to discuss the challenges of life with MS. For others, medicine may help with the emotional challenges, whether they are depression or sudden mood shifts.1
“Mood swings and mental instability.”
Many men living with MS will, at some point, face impotence. Women with MS, too, often have sexual problems. This issue can result from damage to the nerves that carry signals to sexual organs. In some cases, this problem arises from other MS symptoms like fatigue or depression.1
“Impotence. Happened to my husband.”
This symptom is not talked about often, but it is discussed regularly in the MultipleSclerosis.net Facebook community. Community members have shared that sometimes a very specific trigger, such as looking at a checkerboard pattern on floor tiles, brings about dizziness. Loud noises or new environments can also cause sensory overload.1
The triggers vary, but this seems to be a symptom that affects many in the MS community.
“Sensory overload. I suffer from this especially at movie theaters, sporting events, big box stores, and at the eye doctor, to name a few places. It is horrible and can be quite embarrassing at times.”
1. MS Signs & Symptoms. National Multiple Sclerosis Society. Available at https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms. Accessed 5/18/2023.
2. Facial Paralysis. Cleveland Clinic. Available at https://my.clevelandclinic.org/health/symptoms/24525-facial-paralysis. Accessed 5/18/2023.