While countless people know multiple sclerosis (commonly referred to as “MS”) by name, the condition itself remains a mystery to many members of the medical community and laypeople alike. However, with more than a million individuals (70 percent of them women) living with MS in the United States alone, it’s high time people understood what living with this condition really looks like. We’ve teamed up with three women with MS who are setting the record straight about the disease, telling their stories of struggle, perseverance, and survival.
Numbness is one of the most commonly-reported symptoms of MS, and it’s one Nancy Davis, founder of the Race to Erase MS—an organization focused on fundraising for cutting-edge research into the condition—who was diagnosed with MS in 1993, knows all too well. “When I was first diagnosed, I was told I would never walk again and had loss of feeling in different parts of my body,” she explains.
It’s not just physical symptoms that plague those with MS, however. Fear of what the future might bring can be just as nerve-racking as the symptoms of the disease themselves. “I am gratefully doing very well with my MS symptoms right now,” says Davis. “However, there is always the fear that an exacerbation will occur and that I will lose the independence to live an independent life and be a mother to my children.”
That numbness that often comes along with MS, coupled with weakness and a lack of coordination, can quickly lead to a lack of mobility. “My first MS symptom was getting out of bed and falling to the floor since my legs were not working,” says Mary Ellen Ciganovich, author of T.R.U.T.H Taking Responsibility Unleashes True Healing and Healing Words, Life Lessons to Inspire, who was diagnosed with MS in 1986.
While Cigonavich regained her ability to walk, she says that no doctor could figure out what was wrong with her for some time, something that is true of many MS patients. According to research published in the Journal of Neurology, the average time between the first visit to an MS specialist and a diagnosis of the disease is between five and six months.
While many people experience gradual vision loss as they get older, it can come on suddenly in those with MS, no matter their age. “I would teach school, come home to relax, taking a hot bubble bath, and my eyesight would leave until I cooled down–then it would return,” says Ciganovich.” Symptoms came and went until in 1986 I was given an MRI and diagnosed with multiple sclerosis.”
While many of the side effects of MS are unpleasant, one of the worst complications of the disease is the pain it can cause. Chantelle Hobgood, who has been living with MS for 26 years, says that pain is one of her most frequent symptoms—and 50 percent of MS patients experience the same.
However, the type of pain patients experience can vary. Often, it includes trigeminal neuralgia, a type of intense facial pain, Lhermitte’s sign, pain that radiates down the spine and into the extremities, and pain associated with the jerky movements the disease can cause.
One of the more difficult side effects of an MS diagnosis is the constant fatigue you may find yourself dealing with—a symptom Hobgood says she experiences to this day, and one that affects up to 80 percent of those with MS.
Hobgood reveals that one of the symptoms of the disease that has followed her for years is trouble with her cognition—and she’s not alone. According to the National MS Association, more than half of those diagnosed with MS will suffer some sort of cognitive dysfunction, including memory loss, attention issues, reduced information-processing skills, and visuospatial processing issues.
According to Hobgood, frequent anxiety has been a major part of her MS journey, and many other MS sufferers find that they experience the same. The Multiple Sclerosis Association of America reports that MS and anxiety co-occur in 43 percent of cases, though the combination typically affects more women than men.
Actress Selma Blair’s recent MS diagnosis has brought light to one of the more noticeable symptoms of multiple sclerosis: a change in the quality of a person’s voice. While, in a recent interview with Robin Roberts, Blair’s voice was shaky and slow due to an MS-related condition called spasmodic dysphonia. But that’s not the only side effect: many other people with MS experience an inability to control their pitch or volume, as well as general hoarseness when speaking.
Along with anxiety, MS is frequently accompanied by depressive symptoms, whether they’re inherently linked to the disease itself or exacerbated by its symptoms. In fact, research published in the Journal of Neurology, Neurosurgery & Psychiatry suggests that up to 50 percent of those with MS will suffer from depression at some point.
However, despite the massive changes that MS can bring on, Hobgood says that those with the disease shouldn’t lose hope. “It’s my life passion to help other women look at the bright side of life and live it to its fullest… MS has been a blessing for me,” she says. “I’m able to focus on my family and take steps every day to be as healthy as possible. I’m not surviving—I’m thriving!”
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