Doctors urge MS patients not to believe everything they read on the internet.
For patients with complex and chronic medical conditions, knowledge is power. Without checks and balances, it also can be risky.
Physicians who treat patients with multiple sclerosis say the internet in particular provides a wealth of information, both good and bad. For patients seeking to learn more, Google can lead to websites and social-media platforms serving a steady diet of information about diagnosis, treatment and management of their disease.
While physicians welcome patient interest and knowledge, they also caution that not all websites are created equal and not all information found on the internet is valid.
“You don't need to be a highly trained neuroimmunologist with multiple years of education to write something for the internet,” notes Aaron Boster, MD, director of the MS center at OhioHealth.
In general, physicians say they don't discourage patients from seeking information online, as long as they bring what they find to their healthcare professionals.
When patients come to Boster with questions about things they've read on websites or online forums, “I see a patient who is engaged, who wants to be educated and involved in their care.”
So does Timothy Shephard, MD, vice president of neurosciences at Mount Carmel Health System. “The better informed a patient is coming into an appointment, the better that appointment is going to be. I have yet to meet a physician who doesn't welcome a patient who has done research and is well-informed,” he says.
Because the average age of onset for MS is 30, many patients “are people who have grown up with an iPad in their hands,” Boster says. “These are millennials who are extremely comfortable with and savvy about the internet and social media.”
When seeking information about MS, physicians say this: Consider the source.
Especially in the first couple of years following a diagnosis, Boster advises patients to steer clear of the internet when it comes to MS advice. “It takes about two years for a patient to be comfortable in their own skin with their disease. They need to develop filters to evaluate what they read online. Until they do, their care team is that filter.”
Early in the course of their disease, “reading too much is guaranteed to make you frustrated,” says Boster, who also serves as OhioHealth's system medical chief of neuroimmunology. Realizing, however, that patients won't be able to resist the temptation, he urges them to “read with profound caution.”
Boster and others say it's crucial for patients to bring everything and anything they read online to their physicians so they can separate fact from fiction. Physicians say it's their job to temper expectations and provide reliable information. Boster has even initiated campaigns across Facebook, Twitter, Instagram and YouTube to dispense “digestible amounts of information” about the newest developments in MS.
Relying on the internet to diagnose and plan for multiple sclerosis is tricky because the disease manifests itself differently in each patient.
MS lesions can occur anywhere in the central nervous system, and symptoms can mimic other conditions, says Michael Racke, MD, a neurologist at OSU. For example, if the disease affects the optic nerve, loss of vision may result. If it happens in an older person, one might attribute that to normal aging. In a younger person, “We might be more inclined to think MS,” he says.
Because the disease represents a unique interface between the nervous system and the immune system, it's nearly impossible to predict how it will evolve from person to person, Boster says. Twins can have the same disease yet experience it differently, he explains.
Due to this variability, “You can read something from a reputable source, and it still might not apply to your particular disease.”
By its nature, MS can feel like a “lonely” disease, Boster says. Some of its symptoms, such as pathologic fatigue, aren't obvious or observable. Because of its relapsing/remitting characteristics, patients might seem well one month and debilitated the next.
That can cause problems in the workplace, where employers might mistakenly believe employees are shirking responsibility or malingering.
The Multiple Sclerosis Society of America has created visual models of the relapsing/remitting nature of multiple sclerosis to help employers understand what's happening.
When dealing with workplace challenges and other issues, patient forums are another online source of support and information.
“Especially for the newly diagnosed, they can be helpful,” Shephard says. “Forums can be a good source of really creative ideas from people who've gone before you.” They can offer guidance, for instance, on the best places to shop to avoid fatigue, how to deal with summer heat, how to adapt a house for wheelchair access.
Because a significant number of MS patients have difficulty with cognitive processing at some point during the course of the disease, the forums can provide answers on how they and their caregivers deal with the situation, Shephard says.
Boster says forums serve their best purpose by providing a safe place for patients to share with one other. “There is a sense of acceptance, understanding and community that is invaluable.”
They also can be confusing because of the volume of opinions expressed.
Boster cautions that online platforms can be “the bathroom wall of comments,” with little accountability or ownership.
Too Good to Be True?
Those caring for people with multiple sclerosis feel perhaps most uneasy about the internet when it's used to promote unproven,potentially dangerous treatments.
In the past few years, for-profit stem-cell clinics have proliferated in the United States and abroad. Their websites do not go unnoticed by patients, some of whom are willing to try anything.
“In the last 12 months, I've had so many patients ask me, ‘What about these stem cells?'” Boster says.
Although stem-cell therapy is not approved by the US Food & Drug Administration to treat MS, the clinics claim it provides relief from the disease. Some sites feature video testimonials from patients who say their lives have been transformed.
“It looks pretty impressive,” Racke says. “But are patients putting themselves at risk and undergoing procedures that aren't medically necessary?”
He understands their frustration. “Patients who are desperate may be looking for something that is too good to be true. There may be a little too much enthusiasm for untested, unproven treatments.”
Such direct-to-consumer appeals by people promising miracles are “quackery,” Boster says. “It's predatory behavior that is abominable. It's selling false hope, and it's taking advantage of people who are very vulnerable.”
Shephard says patients in the secondary progressive stages of MS are most at risk for seeking cures at any cost. “The best you can do is educate them on the potential risks of alternative therapies and explain why FDA approval is so important. But at the end of the day, it's the patient's right to do what they feel they need to do,” he says. “Healthcare is not about forcing people to do something. It's about advising patients to make the best decision possible.”
Laurie Loscocco is a freelance writer.
On the Cutting Edge
One of the latest developments in MS treatment is the US Food and Drug Administration's approval of Ocrelizumab, available under the brand name Ocrevus. The drug, administered by infusion every six months, has been shown to significantly slow disease progression.
Clinical trials were conducted at the OSU Wexner Medical Center, and the first post-FDA infusion was administered at OhioHealth. Aaron Boster of OhioHealth's MS center calls it a game-changer in MS treatment.
Multiple sclerosis occurs when the body's immune system mistakenly targets the central nervous system. Immune cells attack myelin, the protective coating surrounding nerve fibers.
Damage to the myelin disrupts nerve impulses traveling to and from the brain, causing a variety of symptoms, including:
• Walking difficulties
• Vision problems
• Cognitive changes
• Bowel and bladder problems
People with MS typically experience one of four disease courses, which can be mild, moderate or severe. The most common is relapsing/remitting MS, which is characterized by clearly defined attacks of new or increasing neurologic symptoms. These attacks, also called relapses, are followed by periods of partial or complete recovery (remissions), which last varying amounts of time.
Sites to Search
Local MS experts recommend the following websites for those seeking information on MS:
• The Multiple Sclerosis Society of America: nationalmssociety.org
• National Institute of Neurological Disorders and Stroke: ninds.nih.gov/Disorders/All-Disorders/Multiple-Sclerosis-Information-Page
• Multiple Sclerosis Foundation: msfocus.org