There’s no way to say with certainty how a person’s multiple sclerosis (MS) will progress, and there’s no clear MS progression timeline. MS symptoms — and their relative intensity, duration, and time of occurrence in life — vary on a case-by-case basis. However, if your loved one has been diagnosed with MS, there is clear guidance and support available when it comes to caring for them.
Read on to learn about the four types of multiple sclerosis progression, gain insights into the most up-to-date information on the disease, and discover how caregivers can best support their loved one as they face the challenges of MS.
Multiple sclerosis is a disease of the central nervous system — the brain and spinal cord. The disease is the result of an autoimmune response and chronic inflammation, where the body attacks and damages the myelin sheathing that surrounds and protects nerve cells. This damage to myelin is called demyelinationand results in the disruption of the nerve impulses that send messages between the brain and body. Later in this article, the MS symptoms associated with demyelination are discussed.
There’s no known, specific cause of MS, but researchers are studying possible contributing factors, including environment, immune system malfunction, genetics, and the presence of other health issues.
Research suggests that environmental exposure to unknown agents may play a role in the onset of multiple sclerosis, according to the National MS Society. Recent research also indicates that the following factors may increase the likelihood of developing MS:
It’s still unclear why the immune system would attack the central nervous system (CNS), but scientists know T (cytotoxic and regulatory) and B cells of the immune system are involved. Cytotoxic T cells — or killer cells — release chemicals that cause inflammation and damage to the nerve cells. These T cells also signal B cells to release proteins and antibodies that cause even more damage to nerve cells. Regulatory T cells in a healthy individual will typically “regulate” the cytotoxic T cells, signaling them to stop causing inflammation, but in the case of MS, they do not function properly, and the inflammatory process continues unchecked.
While researchers aren’t yet certain that MS is passed down from parent to child, it does appear that MS onset is more likely in families with a history of the disease. Furthermore, “the risk of developing multiple sclerosis is higher for siblings or children of a person with the condition than for the general population,” as noted in Medline Plus for the National Library of Medicine.
“About 200 genes have been identified that each contribute a small amount to the overall risk of developing MS,” according to the National MS Society. However, research into a causal relationship between genes and MS onset is ongoing.
The lifetime risk of developing MS in the general population is 1 in 330, according to the MS Trust. Risk can also be gauged by a person’s relation to someone with the disease, a risk increases the closer the relation:
Additionally, populations living in higher latitudes are more susceptible, though it’s not clear whether there is genetic predisposition in these populations or environmental causes and/or low sun exposure are factors. (See the linked section entitled Background regarding the Sami people, vitamin D, and fish consumption.)
The onset of MS may be also triggered by some viruses, including measles, canine distemper, human herpes virus-6, Epstein-Barr virus (EBV), and Chlamydia pneumonia. Now the focus of significant research, EBV may be a notable precursor of multiple sclerosis, according to the National MS Society.
While every person diagnosed with the disease will have their own MS progression timeline, there are four MS progression types, also called courses or phenotypes.
CIS is an isolated episode of neurological symptoms caused by nerve inflammation and demyelination followed by recovery. CIS is a recognized potential precursor of MS, but its occurrence does not always mean a person will develop MS. If CIS is associated with MRI-detected brain lesions, there’s a high likelihood a person will develop relapsing-remitting MS.
RRMS is the most common type of MS progression: 85 percent of people with MS are diagnosed with it. RRMS patients experience “clearly defined attacks of new or increasing neurologic symptoms,” according to the National MS Society, with periods of recovery or even remission. RRMS can be characterized by the following periods:
SPMS may follow RRMS, as the disease moves from the inflammatory lesion stage to the more progressive stage of nerve damage and loss. “Disability gradually increases over time, with or without evidence of disease activity (relapses or changes on MRI),” the National MS Society reports. Though each person’s case is unique, some patterns can be seen with SPMS. Like RRMS, SPMS may be characterized as active or not active, with the addition of the following:
In PPMS, neurologic function progressively worsens without relapses or remissions. The inflammation type is also different in PPMS than with the other types, as lesions more often affect the spinal cord than the brain, causing more difficulty with walking and increased disability. As with SPMS, PPMS can be characterized as active, not active, with progression, or without progression.
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MS typically begins with episodic attacks that subsequently resolve themselves, said Dr. George Kraft, emeritus Alvord professor of multiple sclerosis research at the Institute for Stem Cell & Regenerative Medicine at the University of Washington Medical Center.
The initial symptom of MS is often either blurred or double vision, red-green color distortion, or blindness in one eye, according to Kraft. Most MS patients experience muscle weakness in their extremities and difficulty with coordination and balance. With MS progression, the symptoms begin to last longer. For example, at an early stage, a symptom might disappear within a month of onset. Five years later, the symptom may reoccur and not completely go away.
“They typically resolve in the early stages, then they don’t,” Kraft said. “Over time, it converts from something with these episodic attacks to a steady progression.”
However, the symptoms eventually stabilize. This is because the nervous system reaches a state in which its vulnerable areas are exhausted, and there’s no more room for the disease to grow, Kraft explained. At a certain point, however, medication no longer helps a multiple sclerosis patient.
“In the very late stages of the disease, there is no impact,” Kraft said, regarding medication.
If your loved one has MS, symptoms may also include the following:
Prepare is the keyword, according to Hope Nearhood, National MS Society’s director of MS information and resources, advocacy, and healthcare access.
“Often, responses to the effects of multiple sclerosis are reactive versus proactive,” Nearhood noted. “An example of a reactive response is if someone experiences a severe relapse and has to leave the workforce and does not have a financial plan in place for that transition. A proactive response would be to have a long-term disability plan through their work to cover expenses and to have met with a financial planner to create a long-term financial plan for covering expenses on a lower income after leaving the workforce.”
So, while a diagnosis does not necessarily signal the end of a career, pursuit of hobbies, and enjoyment of the many things that make life fulfilling, it is a signal to stop and take stock.
“For individuals who provide direct care to a person living with MS, it is important to know what support services are available,” Nearhood said. “Are there local programs that provide respite services, so the care partner can have a break? If the care partner is paid through Medicaid, which is an option in many states, what are the [Medicaid] rules for respite services?”
Many MS patients may need to enter a long-term care facility by the later stages of their MS progression. Because MS on average affects patients at a younger age, they might be in their 40s when they have to enter a care facility. The MS resident may be more physically dependent but mentally alert, so if needs aren’t met, they may experience more symptoms of depression.
Accessibility is an important consideration for multiple sclerosis patients looking to move into a community, explained Dorothy Northup, former associate vice president of clinical programs at the National MS Society. “Residents need very sophisticated, [mobility] equipment, and that takes a lot of space.”
Caregivers seeking an assisted living community or nursing home for a loved one with MS need to ensure that the prospective community can provide 24-hour care, advanced mobility assistance, and mental stimulation. Many MS patients are intellectually alert and want to be stimulated, Northup explained. They need interesting activities, and the facility needs to make sure transportation is available, so MS patients can go to museums, restaurants, stores, and other places of interest.
“People with MS have so many special needs that are different than most people in the extended care population,” said Nancy Holland, a certified MS nurse, with 40 years in the field.
This is where A Place for Mom’s local Senior Living Advisors can help. They offer free guidance, are experts at matching the right care to your family’s needs, and have intimate knowledge of the options in your area.
Interviews with Holland, Kraft, and Northup were conducted in January 2018.
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