When you get diagnosed with a serious disease, you have a lot of questions.
“How will this affect my life?”
“How will this affect my family?”
“What comes next?”
But when faced with a diagnosis of multiple sclerosis, the answers to those questions can be complicated because the disease affects each person differently.
Multiple sclerosis, or MS, is an autoimmune disease that attacks the protective sheath that covers nerves. And it manifests in many different ways – including numbness, pain, fatigue, slurred speech or loss of vision – depending on which nerves are most affected.
“Each case is so different. It’s not comparable to something like a fracture, where you can say, ‘This is your recovery, and these are the steps you can take in order to get as much strength or function back as you can,’” said Alaine Robinson, supervisor of the MS Clinic at OSF HealthCare Illinois Neurological Institute.
An unpredictable disease
While some people have progressive MS – a form of the disease in which symptoms intensify over time – most people have what’s called a relapsing-remitting disease course. They can have weeks, months or years with little to no symptoms, interrupted by “flare-ups” of the disease.
These flare-ups, also called attacks or exacerbations, can come on suddenly, and no two are alike. One episode might be the onset of optic neuritis, or inflammation of the optic nerve causing changes in vision, while the next might bring difficulty chewing and swallowing.
“Exacerbations can be brought on by a multitude of things. It can be an infection or even a life stressor,” Alaine said.
Because of the disease’s tendency to affect so many different body parts and functions, symptom management can be complex.
A comprehensive MS Center, OSF INI has implemented new processes to respond to the sudden onset of symptoms as quickly as possible.
Specialized MS care
Led by three fellowship-trained MS specialists, the MS Center developed guidelines so nurses or navigators can start the process for changing or ordering new medications as quickly as possible. They’ll even contact a person’s insurance provider directly to get authorization for the medication before they even come into the clinic.
They’ve also integrated multiple medical disciplines into their comprehensive MS exams, giving patients with uncontrolled symptoms one place to access all of the resources they need in a single appointment.
“You’re not just seeing your MS provider. You’re seeing physical, occupational or speech therapy; you’re seeing dietitian, social worker and a psychotherapist. We also work closely with our neuro-ophthalmologists and neuro-immunologists,” Alaine said.
With navigators to help with insurance or financial hardships and an MS Fund for charitable support, the team at OSF INI is committed to providing for each person’s unique needs.
“We want you to know that we’re here to support you, whatever you need,” Alaine said.