Every week about 200 people are diagnosed with Multiple Sclerosis (MS), which may seem like an alarming number, but compared to the incidences of other neurological or chronic diseases, it’s still considered rare. However, what is alarming is the fact that four times as many women have MS as men, according to the National Multiple Sclerosis Society. But why?
We spoke with Stephen Hurlbut, M.D., a neurologist and physician on the medical staff at Texas Health HEB and at Neurology Specialists of North Texas, a Texas Health Physicians Group practice, to learn more about the disease and to understand why it may affect women more than men.
What is MS?
Multiple Sclerosis is a neurological illness that is a form of an autoimmune disorder. Autoimmune disorders cause the immune system to attack healthy tissues in our central nervous system. MS primarily affects the lining of the nerves of the brain and spinal cord, which is called myelin, damaging them. This damage interferes with the transmission of nerve signals between the brain and spinal cord, along with other parts of the body.
It is diagnosed by understanding the timing and severity of a person’s symptoms, a physical exam, and the results of an MRI of the brain or spinal cord, which is usually done with contrast. Sometimes the patient also has a spinal tap to look for certain proteins found in the spinal fluid in patients that have MS.
“MS is typically diagnosed in people in their late-twenties, early- to mid-thirties, but that may not be when they start experiencing symptoms,” Hurlbut adds. “Oftentimes I hear from patients that they’ve experienced typical symptoms in the past, maybe years or months before, that just came and went. Or they had a symptom once awhile back and then it never came back until recently. So you start piecing together this story of these episodes of neurologic symptoms that come and go, and try to rule out anything obvious before moving forward with testing for MS.”
- Difficulty walking
- Numbness or tingling, typically in the face, body or arms and legs
- Spasticity (stiffness and involuntary muscle spasms)
- Vision problems, such as blurred vision, poor contrast or color vision, and pain in eye movement
- Dizziness and vertigo
- Bladder issues
- Bowel issues
- Cognitive and emotional changes
Less common, but still relevant, symptoms include:
- Speech problems
- Swallowing difficulties
- Uncontrollable shaking
- Breathing issues
- Hearing loss
There are also several types of MS, but the most common form is relapsing-remitting MS (RRMS). In RRMS a person will have a flare-up of their symptoms (the relapse) which will usually be present for several days to weeks. They then will show improvement in their symptoms (the remission phase) and will often return to their previous baseline. Approximately 85 percent of people receive a diagnosis of RRMS at first, says the National MS Society.
Secondary progressive MS (SPMS) follows an initial RRMS diagnosis. With SPMS disability gradually increases as the disease progresses. Occasional relapses may occur, as will periods of remission. If RRMS is left untreated, about 50 percent of people with RRMS transition to SPMS within a decade of their initial diagnosis. About 90 percent of people transition within 25 years.
There is a less common form, called primary progressive MS, in which people experience a steady progression of the disease with no clear relapses or remissions. PPMS is diagnosed in about 15 percent of people with MS
There is not a form of MS that is more common in women or men.
Why Are Women More at Risk?
Just as symptoms can vary widely among those with MS, the possibilities of why it affects women more are also varied. A lot is still unknown about the exact cause of MS, regardless of gender.
“There is likely some hormonal and genetic factors that seem to favor women in having the illness,” Hurlbut explains. “There has been some speculation that women might be more likely to have certain underlying conditions such as a higher percentage of body fat, which could contribute to it, as well as lower vitamin D levels, which may have a connection. Right now we really do not have a clear answer as to why women or more likely than men to have MS.”
The major scientific theories about MS suggest the following possible causes:
When a condition affects women more than men, scientists are likely to take a look at the role of sex hormones such as testosterone and estrogen. Although, nothing definitive has been found to explain why it affects women more.
While MS is not hereditary, having a parent or sibling with MS increases an individual’s risk of developing the disease by 15%. Identical twins also have a 1 in 3 chance of having MS.
While you may be scratching your head as to how weight could affect someone’s chances of getting MS, inflammation plays a role in MS, and having high body fat is linked to inflammation.
Women typically carry more fat on their bodies than men, and belly fat, in particular, is associated with increased inflammation. In addition, the inflammation chemicals in women’s bodies are different from those in men, which may contribute.
Vitamin D Deficiency
While Americans as a whole tend to have low vitamin D levels, MS tends to affect more people living farther from the equator. The closer you live to the equator, the sunnier days your geographical location typically has. Because our skin absorbs vitamin D from sunlight, researchers are looking at the relationship between low vitamin D levels and a higher risk of developing MS.
For example, southern states tend to report half as many diagnoses of MS as northern states which tend to have fewer sunny days compared to the south.
While MS is not a curable disease, Hurlbut says due to advancements in diagnosis, medicine and treatments, it is very manageable, similar to other chronic, non-curable diseases such as diabetes.
“Both MS and diabetes are life-long diseases; diseases we don’t currently have cures for,” he explains. “But just like with diabetes, if you take care of yourself, you take your medications, you go to your checkups, etc., you can live a very long, relatively normal life. That’s what it’s turning into with MS. Even though we don’t have a cure, we have a lot that we can throw at this disease.”
Hurlbut says they attack MS with a two-pronged approach, first treating the MS itself to lessen the frequency of relapses and slow the progression of the disease. Second, they treat any symptoms that may pop up during a relapse.
There are multiple oral, injection and infusion options available to treat MS, with infusions being the newest treatment option. Most MS patients who choose infusion receive one infusion every six months without the need to supplement with oral or injection medications between infusions.
Hurlbut says that many people may still have an outdated idea of what the quality of life of someone with MS is like, especially since there has been so much advancement in treatment and life expectancy just in the last 30 years. First and foremost, he tries to be optimistic with his patients, and remind them that they don’t have to throw in the towel if they don’t want to.
“Personally, the toughest part about MS for me is that it tends to happen to younger people who are really starting out in their lives,” he explains. “Moreover, it happens to young women who may be ready to start families or are just gaining traction in their careers around the time of diagnosis. A lot of people get a diagnosis, and they wonder, ‘Should I pursue a career, should I get married, can I have kids?’ I love talking to my MS patients and saying, if this is really what you want to accomplish in your life, the whole point in sticking to your treatment is so that you can still do these things. There may be some things that you have to adjust based on symptoms, but MS is not something in which you have totally give up any plans or life goals you had for yourself.”
People with MS can safely carry a baby to term. In fact, most experience a relief of symptoms during pregnancy. However, in a 2017 survey, 36 percent of women participants decided not to have children at all or postponed the timing of getting pregnant due to their MS.
Hurlbut adds that stress can also exacerbate symptoms. While avoiding all stress isn’t realistic, he says focusing on managing stress is an important part of your treatment plan.
“Sometimes I have to remind my MS patients to be selfish with their time; to take a step back and really take the time to take care of themselves,” he says. “Really put time into the things we all should be doing, such as making sure we control stress, we’re drinking enough water, we’re eating a little bit healthier, we’re getting a little bit more exercise, a little bit more sleep, etc. My MS patients that take that to heart do better. When you’re healthier, it’s just easier for your brain and body to focus on the MS.”
Regardless of gender, Hurlbut says it’s perfectly common and normal to be in shock or grieve after receiving a diagnosis of MS, but the best thing you can do for yourself is to take action. Read up on the illness and the treatment options available. Join the MS society to get information and free publications about the available treatment options and research. Find a doctor that will listen to your concerns and will tailor a treatment plan that works for you. It is also a good idea to look at alternative therapy options such as supplements, exercise, healthy diets, etc. but do not forget to use the available medication options as well to give yourself the best chance for a healthy life.
“Since this is a marathon we’re on — this is a life-long illness — keeping yourself healthy and strong can really help you in the long run,” says Hurlbut.