Reviewed by: Elliot Frohman, MD, PhD
Written by: Abbi Havens
Multiple Sclerosis, more commonly known as MS, is an unpredictable disease. Its symptoms vary drastically and the disease takes many different forms among patients. One individual’s version of MS may appear to an observer as an entirely different disease from another individual with MS. However, there are several commonly shared symptoms of MS, accompanied by secondary and tertiary symptoms. But before we delve into these symptoms and experiences, what is MS?
What is Multiple Sclerosis?
Long story short, it’s complicated. There are four types or phases of MS, and approximately 85 percent of those diagnosed with the disease are diagnosed with Relapsing-Remitting MS. Symptoms tend to emerge in the early 20’s, followed by attacks of symptoms (relapses) and periods of recovery (remissions) which can last days, months, or years. Most individuals diagnosed with Relapsing-Remitting MS will eventually progress to a form of Secondary Progressive MS, in which symptoms become continuous and patients no longer experience periods of remission. Approximately 10 percent of those diagnosed with MS are diagnosed with Primary Progressive MS, in which symptoms gradually become worse over time. This form of MS is more difficult to manage with treatment. Primary Progressive MS typically emerges around the age of 40 and can lead to disability at an earlier stage of life.
The short story? MS (of all forms) is a disease in which the body’s immune system has an abnormal response to the central nervous system and causes inflammation and damage to myelin, a fatty material that protects your nerves. Think of myelin as the rubber coating that protects the wires inside the cord of your headphones. You have most likely been a victim of damaged headphone cords, and you’ve probably noticed that sound is not as successfully transmitted to your ears when the wires are exposed. The resulting scarring on the nerves themselves (the words Multiple Sclerosis literally mean ‘many scars’) affect the nerves’ ability to transmit messages to and from the brain.
What is it like to live with Multiple Sclerosis?
No two cases of MS are identical. Any individual diagnosed with MS may experience a variety of symptoms which evolve or worsen over time. A person may experience all, a combination, or none of the following symptoms. Those diagnosed with MS may also experience symptoms that are not included on this list. However, the following are commonly reported symptoms of MS:
Vision problems. Problems with vision are often the first sign of MS. Damage to the optic nerve can result in blurred vision, poor color contrast, or pain with eye movement.
Bladder and bowel dysfunction. Damage to relevant nerves may affect nerve signals to and from the muscles that control the bladder, bowel, and urinary muscles resulting in incontinence and frequent urination.
Sexual issues. Nerve damage can lead to difficulty reaching orgasm for both men and women. Men may experience difficulty getting and maintaining an erection. Women may experience vaginal dryness and reduced sensation or pain.
Heat sensitivity. Heat makes transmitting electrical signals even more difficult, if not impossible, for already damaged and demyelinated nerves. For this reason, those who are diagnosed with MS may often experience worsening of symptoms when they have a fever, are overheated from exercise, or outside in a warm climate.
General pain. Those with MS often feel a general stinging, tingling pain throughout the body as a result of nerve damage. Other chronic pains may result from issues with walking and muscle spasms.
Fatigue. 80 percent of people with MS experience fatigue. This symptom includes physical fatigue and exhaustion from performing simple tasks as well as mental fatigue. Lassitude fatigue, or “MS fatigue,” is believed to be specific to those experiencing MS and more severe than what we generally regard as fatigue.
Loss of motor control. Muscle spasms, involuntary movement, muscle stiffness, and difficulty walking are common results of damage in the nerves, brain, and spinal cord.
Although not as common as the previous symptoms, many people diagnosed with MS also experience:
Seizures. Seizures are the result of abnormal electrical discharges in injured areas of the brain.
Speech problems. 25-40 percent of those diagnosed with MS experience slurred speech, inability to raise one’s voice, and inability to recall words. Speech problems usually arise later on in the course of the disease.
Difficulty swallowing. Difficulty swallowing (dysphagia) occurs when nerves controlling the muscles in the mouth and throat are damaged.
Tremors. Tremors are often confused with seizures, but the two are separate. Tremors (uncontrollable shaking) can occur in various parts of the body or across the whole body as a result of damage along nerve pathways that coordinate movement.
Hearing loss. Although rare, hearing loss has been reported as the first sign of MS. Roughly 6 percent of those with MS experience hearing loss.
Managing Multiple Sclerosis
Although there is currently no cure for MS, there are many treatment options available to patients to manage symptoms and live life to the fullest. In addition to medications that manage and delay the symptoms of MS, it’s important to build relationships with a wide variety of medical providers to adequately manage all symptoms throughout the course of the disease (and throughout the body). Tailor a team of medical providers that’s right for you, which may include neurologists, rehabilitation specialists (physical therapists, occupational therapists, and physiatrists), speech pathologists, mental health professionals, urologists, obstetricians and gynecologists, and more.
The following lifestyle tips are helpful for managing many MS symptoms (in addition to the guidelines and medications provided by your care team):
- Limit your time in the sun, drink cool beverages, and invest in a cooling vest.
- Observe your energy patterns. Take note of times throughout the day you find you have the most energy, and schedule necessary tasks within those time blocks.
- Keep a notebook of new symptoms, unusual feelings, patterns, and anything that seems abnormal to bring to appointments.
- Do not ignore your mental health. Dealing with the stigma of chronic pain, its effects on friends and family, and the pain itself is not easy. You don’t have to go it alone.
- Engage in stress reducing activities including yoga, meditation, massages, and deep breathing. Consult a doctor to be sure these stress management techniques are right for you.
- When you feel numbness or tingling in the body, try immersing the hands in ice water.
- Limit caffeine and alcohol intake, which can cause bladder irritation.
- Exercise regularly to promote flexibility and improve balance, cognitive ability, and sleeping patterns. Swimming and water aerobics build strength while eliminating the need for balance.
- Kick your smoking habit. Smoking is harmful behavior for everyone, but is particularly harmful for those with MS and can worsen the disease.
Living with Multiple Sclerosis is not easy. But by building a devoted team of care professionals, doing your part to stay healthy and manage your symptoms and addressing your mental health needs, you and your loved ones can live happy and fulfilled lives regardless of your diagnosis. If you or a loved one are experiencing symptoms of MS or are in need of a care team to help manage your MS, speak with your primary care physician about a referral to the UT Health Austin Multiple Sclerosis and Neuroimaging Center.