Late-stage Multiple Sclerosis
Last updated: February 2023
You may find this conversation unsettling, so please decide for yourself if you want to read on. I am discussing the worst-case scenarios for people with aggressive, progressive MS, and what may be referred to as late-stage MS. This is in response to the recent MultipleSclerosis.net MS in America survey and what the respondents asked for in additional information.
Am I going to die from MS?
When I began writing about multiple sclerosis, a common question from the newly diagnosed had the theme of "am I going to die from my MS?" I would answer quite earnestly - MS won’t kill us. But it can cause problems and symptoms that have complications that can be fatal. And multiple sclerosis can at the very least be named an accomplice in death for some people.
The Expanded Disability Status Scale (EDSS)
Many people with MS can live a life about the same length as their peers, but some may have a very aggressive form with a high degree of disability. This is the face of multiple sclerosis that is rarely talked about – the people with MS who are on the far end of the Expanded Disability Status Scale (EDSS), who are totally dependent on others and are facing certain death from complications of this disease.
Understanding EDSS ratings
If you aren’t familiar with the EDSS, those are the numbers used by our neurologists to rate our level of disability. Simplified, the numbers on the EDSS look like this:1
0 = Normal
1-1.5 = No visible disability, but some abnormal neurological signs
2–2.5 = Minimal disability
3–4.5 = Moderate disability, affecting daily activities, but still not severe
5–8 = Increased disability where the person adjusts their routines because of the MS, uses a cane, walker or wheelchair at least some of the time.
8.5–9.5 = Very disabled, bedridden
10 = Death
We are silent about the 8.0-9.5 folks
It is primarily the people rated 0 through 6 or so that we see and talk about. We slip in some occasional mentions of the problems of people with an EDSS of 6-7, but we are pretty much silent about the 8.0-9.5 folks. I feel like the 10’s are only mentioned in obituaries unless they are famous and get a headline about their death.
Complications with advanced MS
MS is a disease of the central nervous system, and although it doesn’t directly cause death it can create problems that cause other forms of physical disability to create complications. Being in a wheelchair or bedridden can make the person more susceptible to infection and pneumonia. Any of these problems can be fatal for someone who has health problems, but especially for a person who is already bedridden and medically vulnerable.2
For an up-close and often intimate and brutally honest look at what life is like for someone on the upper end of the scale and their caregivers, I highly recommend you read some of the articles by Donna Steigleder about her life with her husband Lynn, and his progression over the past few years. Donna writes on the challenges of fighting infections and keeping Lynn healthy.
Preparing for the future
Another one of the reasons we should talk about this part of MS is the need for people to have the opportunity to prepare for what may or may not come, through discussions with their family and others. This is a difficult subject but needs to be tackled head-on. We often avoid discussing death, but it is inevitable for all of us, and whether we have a chronic disease or are in perfect health it is a conversation we should hold.
Updating wills and legal documents
I would wager the majority of you reading this have not updated your wills, your medical power of attorney forms or your advance directives. I confess my forms are now 15 years old and written before I was diagnosed with MS. All of us need to prepare these important legal documents now and not wait until we are possibly incapacitated and unable to make our wishes known. This is important for everyone to do and not just people with progressive forms of MS.
Hospitalization, hospice, or at-home care
Tough discussions also need to be made to review the types of care that might be available and preferred, including hospitalization, hospice or at home care. It may come to a point where the person needs that type of care, and it's important to have those conversations beforehand.
The need for accelerated research for SPMS and PPMS
People might question what they did wrong to have advanced MS while so many others have a milder course of the disease, according to the National Multiple Sclerosis Society.2
This site reminds us that there is nothing in particular we did, but it is the nature of multiple sclerosis to continue to advance, and it affects each of us differently. The difficult condition of late-stage MS punctuates the need for accelerating the research of SPMS and PPMS. The vast majority of us will not face 8.5 or greater on the EDSS scale, but it is still important to support and understand what happens for the people in our MS community who unfortunately reach this point.
Wishing you well,
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: