Karrie Anderson felt her first symptoms of multiple sclerosis (MS) on a softball field in July of 2010. It was a hot day, and as she rounded second base off a teammate’s line drive, her legs gave out and she collapsed to the ground.
“It was like I lost the weight in my legs,” Karrie recalled.
Karrie’s legs were tingly and numb, and within a few days her symptoms expanded to include bladder control issues. Her doctor ordered MRI scans and a lumbar puncture test (commonly called a spinal tap), and on July 16, 2010, told the 38-year-old mom she had MS.
“I remember the date because I was crushed,” said Karrie, now 45. “It was scary because I lacked knowledge about the disease.”
Luckily, Karrie found Dr. Bruce Hughes, a neurologist at Des Moines’ Mercy Ruan Neurology Clinic. Dr. Hughes has over 25 years of experience treating patients with MS, and he became her advocate. Dr. Hughes warned Karrie that her first few years with MS could be tough and that MS is a marathon, not a sprint. That stuck with her.
Karrie went on to experience a broad range of symptoms, including unrelenting fatigue, vision problems, bladder control issues, weakness in her arms and legs, and cognitive challenges. She recalls a particularly challenging meeting with Dr. Hughes when she had a relapse in 2013. “It was a difficult conversation for me to sit down with Dr. Hughes and say, ‘what is happening? Is my MS getting worse?’”
Unfortunately, Karrie was progressing, as shown by her clinical symptoms and new lesions on her MRI scans. Dr. Hughes reassured her that together they’d determine the best treatment approach to try and slow the progression of disability.
These kinds of conversations between MS patients and their doctors don’t get any easier as the disease progresses. But Dr. Hughes and other neurologists stress that postponing or avoiding the conversation isn’t the answer.
“The best marker for disease progression in MS is the MRI scan, particularly of the brain,” said Dr. Hughes. “Especially early in the disease process, I usually see a clinical and radiographic mismatch. This means we’ll see signs of disease activity on the MRI about five to ten times more than a patient will report symptoms in the clinic.”
Dr. Hughes defines disease progression by three markers: continued relapses, worsening of disability (such as needing a cane or wheelchair), and new scarring or lesions on a patient’s MRI scans. Dr. Hughes recommends that ideally, people who suffer from MS should have a baseline MRI when they are diagnosed, repeat it six to twelve months after treatment commences, and then repeat their MRI scans annually, or biannually if they haven’t changed their therapy or haven’t experienced any clinical changes.
In addition to MRIs, neurologists use other tests in the clinic to measure progression, including the 9-hole peg test, which measures upper extremity function, and a timed 25-foot walk test, which evaluates mobility and leg function.
Doctors may perform any number of tests to monitor changes in people living with MS. Here, Dr. Hughes tests Karrie's reflexes and coordination.
If all signs point to the disease progressing, the conversation between patients and their doctors often shifts to the question of whether they should alter their treatment plan. Dr. Hughes believes choosing the right disease-modifying therapy for each patient based on their condition, symptoms and goals, is important for slowing MS progression.
As part of the process of assessing whether a patient should change therapies, Dr. Hughes and his patients weigh a multitude of factors. He will share efficacy, safety and tolerability data for the medicines they are considering, as well as discuss different types of administration that are available – whether that be weekly injections, daily oral pills or monthly or bi-annual infusions. Insurance coverage is another important discussion to have between patients and their neurologist or MS care teams, especially for newer medicines, to help understand the different support and services available to make sure they can gain access to the medicine they choose. Though there are many considerations, ultimately, Dr. Hughes says the decision to start taking a medicine or change medicines is up to the patient and their family.
Karrie agrees that patients need to have an open dialogue with their doctor to best manage disease progression. As her own disease has progressed, Karrie tries to stay optimistic, but she admits she wishes she could one day return to work or go back to being the athletic person she once was before she was diagnosed. Karrie knows that this is likely not a realistic aspiration, but she says that her conversations with Dr. Hughes have given her the right mix of realism and hope.
“The unknown is scary, I find it’s helpful to have a dialogue with your doctor about what’s coming versus what’s happening,” Karrie said. “I know that when I focused time with my doctor around planning for the future, as opposed to what hurts today, it was more productive – and it keeps me positive.”
Karrie sits on the board of the National MS Society, and in 2015, she founded MS Moments, a 501 (c)(3) nonprofit that provides financial assistance to individuals with MS in Central Iowa that helps them get health club memberships, medical massages, acupuncture, chiropractic care and much more.