When Donna Gordon, 47, was diagnosed with multiple sclerosis (MS) in 2014, she immediately warned her twin sister and their older sister to watch out for symptoms.
Multiple sclerosis is an autoimmune disease where the immune system mistakenly attacks the brain, spinal cord or optic nerves.
“We do not know for certain what causes multiple sclerosis, but do know that genetics play a role,” says Dr. Donna Graves, a neurologist and multiple sclerosis specialist at Atrium Health Neurosciences Institute. “For first-degree relatives, the risk of developing MS if a close family member has MS is about one in 334, but for identical twins, the risk increases to one in four.”
When Donna’s identical twin, Tracie Dewitt, was diagnosed in 2015, they were surprised – and knew they would need to lean on each other for support.
Donna’s MS diagnosis
Donna was diagnosed in 2014, though Dr. Graves suspects she had her first MS symptom (also clinically called a “relapse”) years before. In 1997, Donna lost all feeling on her right side and couldn’t move her arm or leg.
At that time, “The doctors couldn’t find anything wrong with me and thought I had fibromyalgia,” she says. “Then my symptoms cleared up over time.”\
But years later, in 2014, Donna experienced another flare-up, this time experiencing numbness and tingling in her feet that eventually moved up her body, causing a squeezing sensation in her ribcage and shortness of breath.
MRI testing confirmed she had multiple sclerosis. After conducting her own research, Donna found Graves, an MS specialist.
“Dr. Graves laid things out for me and gave me the push I needed to take care of my health,” says Donna. “I’ve always appreciated that about her – she keeps it real. I also love the fact that she gives me options. Having her help has been instrumental in keeping me moving forward.”
While Donna still experiences some numbness and tingling in her hands, she hasn’t had any relapses since her diagnosis in 2014.
Tracie’s MS diagnosis
Tracie had her first MS flare-up in 2015.
“I was getting ready to run a half-marathon at Disney World,” she says. “But the day before, I injured my knee and wasn’t able to finish the race.”
The morning after the half-marathon, Tracie woke up and noticed her right pinky finger was numb. She assumed she’d slept on it wrong, but the numbness and tingling continued.
“My twin sister Donna had already been diagnosed with MS and had told me what to look out for,” says Tracie. “I had that in the back of my mind.”
Eventually, the numbness and tingling moved from her right hand to her arm, knee and top of her head. She met with a neurologist, who ordered an MRI, and then met with Graves, who ordered a spinal tap to confirm Tracie’s MS diagnosis.
“I didn’t have very many lesions on my spinal cord and she diagnosed me with clinical isolated syndrome,” says Tracie. A first episode of neurologic symptoms caused by inflammation and loss of myelin can be a first event of MS. A physician must do additional tests to determine likelihood of this progressing to MS.
Graves recommended that Tracie start treatment. Tracie tried a few different medications over the years and they worked well, but she had another relapse in December 2021.
“It was pretty bad,” she says. “I had vertigo and it affected my right side pretty badly. I had to get a cane because my walking was affected.”
Tracie started the same therapy –ocrelizumab –as Donna in February 2022 and hasn’t had any issues since. She still experiences some symptoms, such as slower speech and vertigo, but says they are manageable.
Tracie is thankful for Graves and her expertise.
“Dr. Graves is awesome,” she says. “She really listens and understands what I’m going through. She knows what she’s talking about and partners with me to help me live the best life I can.”
MS treatment
“We have many effective MS treatment options now, which wasn’t always the case,” says Graves. “Tracie and Donna –and patients like them –can go on medication therapy and may go for years without any flare-ups and continue to live very healthy and productive lives.”
In addition to finding the right medication, a healthy lifestyle is essential to managing MS.
“Studies show people who lead a healthy lifestyle are less likely to have relapses,” says Graves. “This includes regular exercise, a healthy diet, managing stress, getting enough sleep and not smoking.”
Multiple sclerosis symptoms
“MS can affect people in many different ways,” says Graves. “There are patients who have mild disease and some who have more aggressive disease and we must treat people based on their needs. Another challenge is that MS can cause a number of different symptoms.”
Symptoms can include:
- Fatigue
- Blurry vision
- Double vision
- Numbness or tingling
- Balance problems
- Weakness
- Vertigo
- Bladder issues
The most common type of MS is relapsing remitting multiple sclerosis (RRMS). This type of MS is characterized by “relapses” or exacerbations in new or worsening neurologic symptoms occur, but are then followed by periods of partial or full recovery, known as periods of “remission.”
“One of the challenges in diagnosing someone with MS is that these symptoms will often go away on their own and may be missed if the appropriate testing is not done,” says Graves. “We now know it is important that we diagnose and treat MS as early as possible in order to have the best outcome for our patients.”
Multiple sclerosis risk factors
There are several risk factors for MS:
- Genetics or family history of MS
- Smoking
- Obesity
- Low vitamin D levels
- Epstein-Barr virus infection
MS is fairly common with nearly 1 million people in the United States living with MS.
“MS is not considered an inherited disease –it is not passed from generation to generation, but there are genes that may increase your risk of MS,” says Graves. “In fact, researchers have identified hundreds of genes that carry a small increased risk of MS.”
Women are more likely than men to develop MS. Two-thirds of cases are in women. Most commonly, MS is diagnosed in young adults –the typical age for diagnosis is in a person’s 20s or 30s, though MS can occur in children or older adults.
Support during the MS journey
“When my sister was diagnosed, I wanted to help her,” says Donna.
“We’ve looked up information together and attended MS events with our husbands,” says Tracie. “It’s good and sad to have someone to go through that with.”
Donna’s advice for those recently diagnosed with MS: Avoid reading posts on unmoderated forums. Advocate for yourself and speak up if something doesn’t feel right. Be proactive about your care. And be willing to try different medications to find the right fit.
“Don’t be afraid of your diagnosis and treatment,” says Donna. “You can still have a great life with MS.”
Tracie adds, “Find a partner in MS, such as through a support group. Without my sister, I would have been lost. When you have someone who really understands what you’re going through and has experienced it, it makes a world of difference.”
“The thing that I would most like for people to understand is that MS can be quite manageable,” says Graves. “Individuals can continue to live a full life. While MS is a chronic illness and we have to manage it appropriately, it does not have to define someone’s life and they can continue to live full, happy and healthy lives.”
Learn more about multiple sclerosis treatment at Atrium Health Neurosciences Institute.
