Multiple Sclerosis (MS) is an autoimmune disease of nerve fibers. For unknown reasons, our body’s immune system attacks the myelin sheath that encases nerve fibers in the brain and the spinal cord (together, the two are called the central nervous system). Nerve fibers are like wires that conduct signals. The myelin sheath is like the colored plastic coating you may have seen covering wiring in your home, car or electronic device. Imagine if the plastic sheath were removed from the electric wires in your home; you would have all sorts of electrical problems and possibly fires. Analogous issues occur in the body when the myelin sheaths are disrupted. Electrical signals no longer move quickly and flawlessly; many symptoms can result.
Some of the symptoms caused by the nerve fiber failures include double vision, loss of vision, numbness, tingling, pain, slurred speech, weakness, trouble with coordination, difficulty swallowing, trouble breathing, and confusion. You guessed it. Nerves control everything; so, most functions can be affected.
According to the National Institute of Neurologic Diseases and Stroke, fortunately, most people with MS are mildly affected. Those with the mildest symptoms probably go undiagnosed. Those with more severe symptoms need expert medical care.
A study by Wallin et al., using 2010 data, estimated that more than 700,000 Americans have MS. This study also confirmed that more cases are found in the less sunny northern latitudes. According to the National MS Society, the number of people with MS, based on 2017 data, is more than 900,000. Clearly, in the last several years, more people are being diagnosed with MS. Women are affected more than twice as often as men, which is not unusual for autoimmune diseases. MS usually strikes people age 20 to 50.
There are four types of MS. The most common is called relapsing-remitting. People with this type will have flares of the disease with partial or complete improvement between episodes. Most who start with this type will eventually convert to a progressive course called secondary progressive MS. Others start with a progressive pattern, termed primary progressive.
Until the last several years, treatment options for MS were quite limited. However, now there is a variety of different treatments, including oral, injected and infused. The most effective newer ones have more potential side effects, especially infections, because the medications work by decreasing the immune system’s reactivity.
Corticosteroids such as dexamethasone have been used for many years. These days, they are reserved for severe attacks. Plasmapheresis, a treatment that washes proteins such as antibodies out of the blood, is used when steroids are unsuccessful in stopping flares.
When MS is severe or has progressed significantly, patients, families and caregivers can be burdened by the symptoms and disabilities of the disease. The palliative care program of The Elizabeth Hospice can provide an extra layer of support for MS patients with significant disease. One of our services is goals of care discussions, where patients and family members explore what’s helping and what is not, what’s worthwhile and what is a significant burden.
When the aggressive management of MS no longer provides sufficient benefit or leads to complications, many patients choose hospice care. As the largest nonprofit hospice provider in San Diego County and Southwest Riverside County, we offer personalized, compassionate support to patients and their families. This comprehensive program goes beyond managing symptoms and relieving pain. Our focus is not on curing the incurable but on bringing meaning and joy to a person’s life.
The Elizabeth Hospice provides all the necessary durable medical equipment, like walkers, hospital beds and bedside commodes, as well as hospice-related medicines. Each patient is placed under the care of an interdisciplinary team comprised of a hospice doctor or nurse practitioner, registered nurse case manager, social work, home health aide and spiritual counselor.
Family caregivers greatly appreciate the support they receive from The Elizabeth Hospice. With our help, they are free to be loving family members without worrying about their loved one’s medical and nursing details of care. Hospice even has respite care, a three-to-five-day stay in a nursing home supervised by the hospice team, that allows family caregivers the opportunity to take a vacation or other needed breaks.
The important thing is that you and your loved one will receive the attention and treatment you need and deserve. We call this individualized, compassionate care, The E Way. To find out how your loved one who has been diagnosed with MS can benefit from hospice care, contact The Elizabeth Hospice at 800.797.2050.
By George Delgado, MD
Chief Medical Officer, The Elizabeth Hospice