What Your Multiple Sclerosis Prognosis Means for Sex
Savannah "Sav" Karako, a school behavioral analyst in Painesville, Ohio, was diagnosed with relapsing-remitting multiple sclerosis (MS) in March 2018 during her senior year of college. She had developed double vision in one eye and went to see an ophthalmologist, thinking she simply needed a new contact lens.
"I couldn't even see the big E on the vision board," she said. "The doctor and tech looked at me like I was crazy. Then I was handed off to another doctor, and another and another."
Finally, she was told she had nerve palsy in her left eye, most likely attributable to MS. Bewildered, she started sobbing.
"I literally had no idea what MS was, how it happened, how it worked, anything," she recalled.
Karako's story is similar to those of many patients: Vision struggles are the most common early indicator of MS. Although the disease affects about 1 million adults in the United States, it's considered rare, meaning many newly diagnosed patients are unfamiliar with it.
But as Karako quickly realized, learning about the condition and dispelling myths surrounding it are crucial to taking control of your health and well-being.
Multiple sclerosis and sexual health
MS is a disease in which the immune system eats away at the protective covering of nerves, and the resulting nerve damage disrupts communication between the brain and the body.
About 63 percent of people with multiple sclerosis report that their sexual health has declined since diagnosis. Studies indicate 40 percent to 80 percent of women with MS and 50 percent to 90 percent of men with MS have sexual issues.
Arousal begins with the brain sending messages via your nervous system running down the spinal cord. If multiple sclerosis has damaged any of those nervous system pathways, perhaps because of lesions in the cortex and spinal cord, sexual response—including the ability to orgasm—can be impaired. Nerve damage may contribute to pain, spasticity and bladder or bowel issues that impede sexual function.
Psychological problems, including anger issues, anxiety, depression, mental fatigue and a loss of self-esteem, may result from having MS. Of course, there's also the stress of having to deal with a chronic illness.
Men may have difficulty getting and maintaining an erection. They may experience reduced sensation in their penis. Women can have reduced sensation in their clitoris and may also suffer a heightened sensation that feels painful. Vaginal dryness is also common.
Although fertility is unaffected by multiple sclerosis, the disease may interfere with the sexual process. In particular, a man's ability to get an erection and avoid "dry" orgasms—when no semen is released during climax—may be impeded.
Treatment for sexual dysfunction because of MS depends on the symptoms. A patient may be referred to specialists including gynecologists, neurologists, urologists and more.
Medications and treatments
Managing multiple sclerosis, like most chronic illnesses, involves a combination of medications and lifestyle changes.
"We've known about MS since the 1800s, so we have a long history of knowing what happens to patients with MS when there were no effective treatments, which didn't arise until 1993," said Amparo Gutierrez, M.D., a neurologist at Orlando Health in Florida. "We know diet and exercise are obviously very important. But stopping the disease from progressing is the most important thing someone can do, and that's with medications."
She said there are more than 25 different available medications, including pills, injections and infusions. All have different mechanisms of action, but all share a common goal: to prevent new lesions, curb inflammation and protect the brain.
Gary Belt, M.D., is a neurologist and the interim director of the MS clinic at the Atlantic Neuroscience Institute at Overlook Medical Center in Summit, New Jersey. He explained that although a nerve might heal after a flare-up, it will never work as efficiently. After a series of attacks, this could lead to significant disability and difficulties with mobility, cognition, sexual function, and bowel and bladder control, among other things.
That's why preventing flare-ups and disease progression is vital.
"The brain controls everything, so, unfortunately, MS patients over time can have anything and everything go wrong," Gutierrez said. "With successful treatment, we prevent that from happening."
Karako started steroid treatment immediately after her MS diagnosis. Her symptoms dissipated within nine days, and she hasn't had a flare-up since. She initially tried a twice-daily pill, which made her extremely nauseous. Her doctor recommended a different therapy, a twice-annual infusion of the drug Ocrevus.
"It doesn't make me feel any type of way other than better when I get it. I can definitely tell the difference in my energy levels when I get a fresh infusion, but there are no adverse side effects," she said. "It's very much a blessing."
Some trial and error may be required to find the right treatment plan. Just as MS can affect various systems and functions, so can medications. Belt explained that sexual health difficulties are among the more common side effects of certain MS drugs designed to curb muscle stiffness and spasticity. Some drugs can cause nausea—as Karako experienced—diarrhea, respiratory issues, or abdominal or back pain.
Aside from addressing MS itself, many patients seek help for depression through counseling, medication or a combination of the two. Belt said depression is common in MS patients, likely due to a mixture of psychological and physical factors present with the condition.
Chronic illness and the pathological fatigue associated with MS are correlated with higher incidences of depression. MS attacks the brain and can cause atrophy, which has been linked to diminished mental health. Like MS, depression is highly treatable, and atrophy may be reversible, to an extent, with proper care.
There's no cure for multiple sclerosis, although medicines and treatments can ease symptoms and slow down the progression of the disease. Some lifestyle changes can also help:
Don't ignore it
"You can't ignore the illness," Belt said. "If you do nothing about it, chances are you'll be very, very sick eventually."
MS can present in all kinds of ways. The uncertainty can be difficult to grapple with, however, facing the disease head-on empowers you to take charge of factors that you can control. This approach includes assembling a healthcare team, with a neurologist specializing in MS and a neuropsychologist to assist with cognitive health.
Depending on your situation, your doctor might recommend seeing additional providers, such as a physical or occupational therapist, a psychologist or mental health counselor, and/or a speech pathologist.
You might need to adjust your environment or ask for accommodations at work. Connecting with others who have the disease can help, too. Organizations like the National Multiple Sclerosis Society provide a bevy of resources, including links to healthcare and social services providers and support groups.
"I always think, I can't control anything that's happened to me, but I can control what happens to me moving forward in terms of my health and wellness," Karako said. "My mom always told me it's my new normal, so I've made my new normal being busy and active. This disease isn't going away."
Many people with MS experience mobility challenges—particularly during flare-ups—and about 10 percent or more require mobility aids 10 to 15 years after their diagnosis.
"You have to remain active," Belt advised. "If you don't, everything falls apart. You need activity and you need engagement."
For people with trouble walking, Belt suggested taking short 10- to 15-minute strolls, or going to the gym to do light leg weight repetitions or slow paces on the treadmill.
"As I researched more about the disease, I was like, 'I'm not going to be in a wheelchair. I'm going to be able to walk,'" Karako said. "And I kept reading that the best way to do that is by staying active."
To stay active, she goes to the gym three or four times a week. In addition to her job as a school behavioral analyst, she coaches softball and bartends.
"I can't change anything that happened to me," she said. "I'm not going to sit around and sulk about it. I'm just going to keep living my life as if nothing is even wrong with me."
Karako added that she has had to learn to establish boundaries to avoid overexerting herself, but staying active has been crucial for her mental and physical health.
Experts recommend creating an exercise routine that fits your abilities and preferences, with a focus on consistency and gradual progress. Working with a physical therapist who specializes in MS can be helpful.
Eat a healthy diet
A nutritious, balanced diet high in antioxidants, vitamins and minerals can bolster overall health, which may help slow the progression of multiple sclerosis and prevent flare-ups. Conversely, research shows diets high in salt, ultra-processed foods, red meat, saturated and animal fats, and other inflammatory ingredients might exacerbate MS symptoms.
"We recommend a healthy diet more along the lines of a Mediterranean diet," Gutierrez said.
Extensive research shows the Mediterranean diet supports cardiovascular and neurological health, among other benefits. Generally, it's a plant-based approach, predominantly consisting of fruits, vegetables, nuts, beans, whole grains, healthy fats and seafood, with little dairy or red meat.
Gutierrez explained that staying healthy is essential not only to contain MS but also to prevent other diseases—such as diabetes and high blood pressure—that affect the brain and nervous system.
"If you control your diet and weight and exercise up front, you can potentially prevent disorders known to worsen MS," she added.
Smoking is unequivocally harmful and can lead to all kinds of health problems, including accelerating MS progression. People who smoke might develop secondary progressive MS faster and have less success with disease-modifying therapies than nonsmokers, according to the National Multiple Sclerosis Society.
A 2020 study in Innovations in Pharmacy found 52 percent of smokers with MS were unaware of the effect smoking could have on their condition. Although many people smoke to relax, research shows smoking can increase a person's risk of anxiety and depression—both symptoms commonly associated with MS—over time.
Don't give up
"When I was diagnosed, I would freak out about it. You have those moments where you're like, 'I don't know what's going to happen.' The uncertainty is crazy," Karako said. "You can't do that. You just need to live your life in the moment because you can't change what's happened."
"Stay active, stay engaged and know that the disease can be very well-controlled and stopped in its tracks. We've been very successful at allowing people to live their lives normally," Gutierrez said.
To this end, it's crucial to work with your doctor regularly and keep up with your treatments, whether that's a twice-daily pill or a twice-yearly infusion.
"You can have MS, [but] MS doesn't have to define you," Gutierrez added.