“Knowledge is power: knowledge without the use of common sense and wisdom is intellectual suicide”~ Linda Rousay
People die every day from MS. It’s true. The reason you don’t hear much about these deaths is because of semantics. When you are diagnosed with Multiple Sclerosis it is considered an incurable disease. When you die, an autopsy may or may not be preformed. Regardless, the outcome is the same, once you are labeled with MS, it doesn’t matter if the neurological damage stops your heart from beating or your intestines close up not allowing food in, death will always be listed as “Died of Natural Causes.” Therefore the claim that MS rarely kills is a blatant lie, everyone with MS will die, the aggressiveness of the disease just dictates how fast it will kill you. The ANA published a paper in 2009 about 5 pages long with one little over looked statement. “It is impossible to know how many people die from complications of MS, for reasons stated above..( for the sake of time, I didn’t paste the entire page here ~LRousay).
…”Post mortem examinations are not routinely performed in patients with MS. In the United States alone, reported deaths from complications of this disease exceeded 1,000 in 2007.” MS is usually diagnosed in people between the ages of 20-40. Those figures are misleading because many people are misdiagnosed in their teens only to be correctly diagnosed with MS 10 to 20 years later. Many people are not diagnosed for many years after symptom onset. In the case of trauma onset MS, a person might be diagnosed much younger.
Post mortem evidence has shown that a substantial number of people are never diagnosed with MS during their lifetime. Scleroderma, chronic fatigue syndrome, Hughes Syndrome, Fibromyalgia, NMO or Devic’s disease, dementia, major depressive disorder, in fact over a dozen conditions or more are routinely misdiagnosed when a the person indeed has MS. It works in reverse also. People with those conditions may be given an MS diagnosis when they do not have it at all.
In addition to MS, we are as susceptible to any other diseases or condition as the general population. Because our symptoms are so diverse, it becomes very convenient to blame every ailment or physical anomaly on Multiple Sclerosis. People have died from cancer, COPD, liver failure, kidney disease etc. who could have been saved if they were correctly diagnosed.
Chronic pain exists for 40 to 60 % of people with MS. If their doctor treats only the pain, terminal illness can develop while the person has no knowledge of its existence because they are led to believe it is just another manifestation of MS.
In general, most neurologists agree that the life span is “near normal” for PwMS. When I asked what “near normal” is from the CDC, I was told that 8 or 9 years would be considered a reasonable loss of time a person could expect with MS. I don’t know about you but I think I might have a few important things to do in 8 or 9 years’ time; especially if I had a “near normal” quality of life.
Common causes of death in People with MS:
- Pulmonary involvement
- Severe infections, sepsis
- Aspiration pneumonia
- Thermal Injury
- Demyelinating lesions, involving brain regions that regulate cardio-respiratory activity
- Pulmonary embolism
A study done in Scotland in 1990’s: a sampling of 216 patients 67% died from complications of MS
85 % die within 20 years of onset at age 50.
Causes Death in Multiple Sclerosis: Death rate is greatly accelerated in those who have progressive disability
- Bronchopneumonia 55%
- Septicemia 11%
- Myocardial infarction 15%
- Documented pulmonary embolism 4%
Death rate increases substantially when Secondary Progressive MS is diagnosed.
“MS is not fatal, but some complications which can arise from more severe MS, such as pneumonia, can be.” (NHS UK) (This statement makes reason stare)
As a result, the average life expectancy for people with MS is around 10 years lower than the population at large.
A Society clinical bulletin on Pulmonary Function and Rehabilitation states that “Just as muscular weakness in the limbs occurs early in the disease and increases as the disease progresses, the same progressive weakening occurs in the ventilatory muscles. Ultimately, respiratory complications are considered the major cause of morbidity and mortality in individuals with advanced MS.”
Immobility due to MS can cause pressure or bedsores. Pressure sores usually begin with minimal problems but left untreated progresses more serious infections including sepsis – basically a full-body infection caused, in the case of pressure sores, by bacteria entering via the open wounds. Many factors can contribute to pressure sores; they include immobility or inactivity, decreased sensation, bowel or bladder incontinence and poor nutrition. PwMS are more susceptible to colonized staph infections and MRSA than the general population for the same reasons.
Other common infections which can lead to life-threatening consequences include recurrent and severe urinary tract infections (UTIs) it is not uncommon for those predisposed to UTI infections to have great difficulty in curing them. Some people have ongoing infections in the urinary tract that eventually infect the entire urinary system. Kidney disease and failure often follows. Antibiotics, the normal first line of defense, becomes the problem as the body builds a resistance to them calling for more potent and broader spectrum antibiotics. There have been no appreciable developments in the development of better antibiotics in several decades. MRSA has become a problem worldwide with no overall or comprehensive accepted or treatment.
Dysphagia – or swallowing problems – can cause food or liquid to be aspirated into the lungs. The body reacts with inflammation and fluid accumulation leading to pneumonia and respiratory failure.
The reported rates of a person with MS committing or involved with assisted suicide has risen from 6% 10 years ago to 15% in 2011. Depression left un-diagnosed and therefore untreated is the number one cause.
Palliative care is a more comprehensive approach to healthcare. It involves the physical, emotional, social, and spiritual care of people with progressive MS. Palliative care should be provided by a team of doctors, nurses, and other specialists who work to provide for all of the needs of the MS patient and their families. Fear of the future and quality of life are by the biggest concerns I hear every day from PwMS. Palliative care is not synonymous with hospice care, though it often turns out that way. The goal should not be to make one’s passing easier, but a concerted effort to locate and provide the best medical care as well as a means to cope with everyday life. It is as important for those receiving treatment for curable diseases or progressive disability as it is for those facing end of life decisions. There is no cure for MS any more than there is a cure for growing old. That doesn’t mean that recovery and a diminished QOL are forgone consequences.