By Laura Kolaczkowski—July 2, 2015
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.
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 kills us. The life expectancy for someone with multiple sclerosis is very similar to the general population and the leading cause of death for people with MS is heart disease, cancer and stroke, according to the MS Foundation. They point out that MS affects the quality of life but not the quantity.1
I was challenged by more reading, research, and some other people with multiple sclerosis to rethink my answer. While MS technically is not a killer by itself (except in rare circumstances), it can cause enough problems and symptoms with complications that can be fatal, and multiple sclerosis can at the very least be named an accomplice in death for some people.
The majority of people with MS will live a life about the same length as their peers, but there is the small percentage of people, estimated at 10-15%, who will have a very aggressive form with a high degree of disability.2 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 Severity Scale (EDSS), who are totally dependent on others and are facing certain death from complications of this disease.
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