MS Patients Must Take Charge of Their Care

As many as 400,000 people die each year in U.S. hospitals due to errors, making medical errors the third-leading cause of death in the United States, a 2013 study says. People living with a chronic condition such as multiple sclerosis (MS) are especially vulnerable to medical mishaps, since MS is a complex disease that requires ongoing care involving multiple experts.  

“Many MS patients require the care of specialists in addition to their MS neurologist,” Samantha Schech, LSW, client services specialist for the Multiple Sclerosis Association of America (MSAA), told Healthline. “For example, a urologist specialist may be involved if the patient experiences challenges with the bladder that are determined to be beyond the MS neurologist’s scope of care.”

The use of complementary and alternative therapies in the form of over-the-counter supplements, fresh herbs, or essential oils also has the potential to complicate care. Patients may not realize that a plant or vitamin can interact with prescription medications, so they don’t mention using supplements to their doctor.

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Patients expect their medical team to keep track of follow-up appointments and medication changes, but sometimes things slip through the cracks. “It is very important for patients to try and have an active role in their medical care plan,” Schech said, “or have a point person in place that can manage it for them, like a spouse or caregiver.”

Knowing the “big picture” is key for doctors to avoid making inadvertent mistakes. Prescribing a drug that interacts with another medication or supplement they are unaware their patient is taking can have tragic consequences. With proper communication, these errors can be avoided.

Laura’s Story

Diagnosed with MS in 2008, Laura Failla from East Windsor, New Jersey, also suffers from a seizure disorder and has developed chronic biliary pain that has yet to be explained. She sees multiple doctors because each one is treating a different condition.

No stranger to the healthcare field, Failla once worked in a physician’s office and she’s savvy about the need to know one's health history and make sure doctors are informed.

“When it comes to my health,” Failla told Healthline, “I am very particular and make sure each doctor knows exactly what is going on with the others. I ask for copies of lab work and MRIs just in case someone else wants to see it.”

I reiterate the meds I am on to each doctor at each appointment. Saying, 'Can we make sure your records are up to date?' makes me uncomfortable and the nurses cranky, but it's a necessity.
Laura Failla

But even the best informed patient can be caught unawares. “My seizures were difficult to control, and after yet another medication switch, I thought they were, finally," said Failla, "[The seizures] slowly reappeared, though, and I was crushed.”

One afternoon, Failla came home from the beach to an urgent voicemail message from her doctor. 

“The story, as he told it, was that he had gotten a panicked phone call from my mail-order pharmacy where I receive my MS medication. The medication that the [gastrointestinal] doctor had prescribed for the biliary pain about six weeks earlier had the potential to not only cause the seizure medication to stop working, but also to affect a very particular portion of my heartbeat, which could have been a serious problem when combined with my MS medication.”

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When the problem was discovered, Failla stopped taking the gastrointestinal drug and eventually her seizure medication started to work again. Because the interaction between the medications had happened gradually, Failla said, “I did not put it together that it was caused by the biliary medication.”

How to Protect Yourself

Whether you are taking multiple medications, dealing with many different doctors or pharmacies, or even exploring alternative therapies, staying on top of your records, treatments, and doctors is important for someone with MS.

"Nobody knows a person with MS like that person themselves," said Dr. Daniel Kantor, immediate past president of the Florida Society of Neurology and founder of the Medical Partnership 4 MS. "In today's complex managed care environment, it is even more important to make sure that you are getting the care that you deserve."

It may be helpful to keep a medical binder that can be brought to the appointments and updated with the doctor. The patient can keep track of ... changes to medications or treatment plans, and update each doctor at the time of the appointment.
Samantha Schech, Multiple Sclerosis Association of America

To help you manage a complex healthcare team, Schech says, “it may be helpful to keep a medical binder that can be brought to the appointments and updated with the doctor. The patient can keep track of the dates of visits, changes to medications or treatment plans, and update each doctor at the time of the appointment.”

Kantor adds, "When you go from one specialist to another, you should make a request to have your records forwarded."

The MSAA also has a smartphone app to help patients manage their medical care. My MS Manager allows you to input and store medical records as well as contact information for the healthcare team.

As for Failla, she has learned from her experience that even the most savvy patients can sometimes miss important clues.

“I reiterate the meds I am on to each doctor at each appointment,” she stresses. “Saying, 'Can we make sure your records are up to date?' makes me uncomfortable and the nurses cranky, but it's a necessity. I also ask the pharmacist about any interactions and closely read the information sheet [that comes with the medication].” She is determined to never let a mistake like this happen again.

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