Do People Die from Multiple Sclerosis?


“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:

  1. Pulmonary involvement
  2. Severe infections, sepsis
  3. Aspiration pneumonia
  4. Suicide
  5. Thermal Injury
  6. Demyelinating lesions, involving brain regions that regulate cardio-respiratory activity
  7. Pulmonary embolism
  8. PML

 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

  1.  Bronchopneumonia 55%
  2.   Septicemia 11%  
  3.  Myocardial infarction 15%
  4.   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.

CCSVI, Vitamin & Mineral deficiencies, skeletal misalignment, Lyme Disease,are a few but treatable aspects of MS.Image

 

 

http://jnnp.bmj.com/content/50/5/523

http://jnnp.bmj.com/content/83/1/61.abstract

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Food for thought:


(This is an excerpt from a blog I wrote about the growing conflict in the clinical diagnosis of Multiple Sclerosis and how it relates to CCSVI,  trauma,Chlamydia pneumoniae,vitamin and mineral deficiencies and other causal factors in both MS and  CCSVI.)745056-fig2Probiotics_Info_from_siteshapeimage_9SpirochetesEx2[1]

Now that Lyme has become a hot topic, people are demanding better testing facilities. A fair number of people previously diagnosed with MS have learned they have Lyme Disease. That is another factor in the growing suspicion that MS as it is globally defined, is not a disease at all but rather a term used to pigeon hole people into a generic box of symptoms. Interestingly enough, some of these people also have CCSVI and been treated successfully with angioplasty.

This has been a fascinating puzzle for me but I have finally come to make some sense of it. Most venous anomalies are congenital, not to be confused with hereditary. Ten people can be bitten by ticks who harbor the spirochetes that cause Lyme disease. Statistically speaking less than half of them will actually develop the disease, other health issues not withstanding. We are beginning to get a clearer picture of “MS” with in depth review of the facts we have learned about CCSVI over the past several years. The narrow view that CCSVI is confined to PwMS has been blown out of the water. Some patients with other neurological disorders such as chronic fatigue syndrome, fibromyalgia and Alzheimer’s disease meet the criteria for CCSVI also. It’s no wonder that people are confused by the diverse laundry list of symptoms among those in the MS community.

Lyme Disease, MS/CCSVI Just the Facts Please


This is a long read about Lyme disease, but one you don’t want to miss if you have MS/CCSVI.

 So you found out you that you have Chronic Cerebro-Spinal Venous Insufficiency . You are fortunate enough to have angioplasty to treat the condition and have gained some symptom relief. Since the diagnosis of Multiple Sclerosis has become blurred with other conditions you might decide to be tested for other diseases just to be sure. After 12 years of progressive MS you find out that you have Lyme disease. How did that happen? You never saw a tick, or bulls eye rash which are two of the main tell tale signs of the disease. Don’t feel bad a high percentage of people with Lyme are certain they never have been bitten by a tick. In retrospect, some remember the black dot on their head and thought it was a piece of bark, or a freckle that they accidently scraped off their ankle.

 

Though I have written many times about Lyme disease, more people with an MS diagnosis are being tested and found positive for Lyme disease. This is a result of thinking for ourselves and taking charge of our own healthcare. Kudos to us. If you are unsure of the testing process please refer to my link: https://www.facebook.com/notes/linda-rousay/got-lyme-are-you-sure/10150244085504598

https://www.facebook.com/notes/linda-rousay/more-slime-on-lyme-disease/10150216961964598

How and where to be tested:  http://www.lymeinfo.net/support.html

https://www.facebook.com/notes/linda-rousay/keep-an-eye-on-lyme/10150214276149598

 

 

Lyme disease can be easy to treat in some while in others, it can feel like a never-ending battle. Chronic Lyme disease, is a systemic, debilitating condition which persists despite antibiotic therapy. The seriousness of this condition and its resistance to treatment requires an individualized treatment plan.  It is widely misunderstood and surrounded by controversy, which causes problems with physicians, friends and family, insurance companies, disability coverage, etc. Lyme can be overwhelming and is often misdiagnosed as MS, fibromyalgia, chronic fatigue syndrome or some other neurological disorder,

 

There is no established cure for chronic Lyme disease. The response to treatment varies greatly from patient to patient. Many patients find they need to stay on antibiotics long-term for many years. Patients may also need combinations of antibiotics, co-infection treatments, medications for symptoms, and natural therapies. With these treatments some patients experience full recovery. Those who don’t are left to continue the search for treatment options.

 

There are support groups online and in the community can be very helpful. These groups enable patients to learn about new treatment options and to connect with others facing the same uncertainties.

I have to insert a caution here as I always do for people with MS/CCSVI: The use of steroids to treat pain causes widespread concern among patients and physicians alike that steroids can be very harmful to patients with Lyme disease. Steroids suppress the immune system, which can be dangerous with an infectious disease.

 

More and more people with chronic Lyme disease have other tick-borne illnesses as well. These other illnesses contribute to the difficulty with treatment.

Late stage Lyme Disease (LD) is more severe than early stage, and it’s also potentially debilitating. Symptoms of late stage LD can crop up weeks, months or, in some cases, years after a tick bite. Some of the symptoms of late stage LD include fatigue, headaches, sleep disorders, chronic arthritis, joint inflammation in the knees and other joints and memory loss. More severe symptoms include:

• Decreased consciousness

• Confusion

• Numbness and tingling

• Abnormal sensitivity to light

According to the Centers for Disease Control and Prevention (CDC), after several months, approximately 60 percent of people who don’t get treatment for the infection will begin to have sporadic bouts of arthritis, with severe joint pain and swelling. The large joints are the ones that are most often affected, particularly the knees.

There are three oral antibiotics that are recommended to treat virtually all the symptoms of LD, including late stage—doxycycline, amoxicillin and ceftin. For joint pain and arthritis from late stage LD, doctors usually prescribe medicine that reduces swelling and pain. If needed, excess fluid can be drained from the affected joints.

 

What Are the Treatments for Late Stage Lyme Disease Joint Pain? http://www.ehow.com/way_5544059_treatments-lyme-disease-joint-pain.html#ixzz1w5yf9wcK

What Are the Treatments for Late Stage Lyme Disease Joint Pain? | http://www.ehow.com/way_5544059_treatments-lyme-disease-joint-pain.html#ixzz1w5yNrJuF

Lyme is a real disease: http://www.hindawi.com/journals/ipid/2010/876450/

Lyme can be a major pain in the butt when it comes to the medical profession: http://archive.fwweekly.com/content.asp?article=7478

Lyme And Panic Disease: http://www.thehumansideoflyme.net/viewarticle.php?aid=37

Late and Chronic Lyme Disease: Symptom Overlap with Chronic Fatigue Syndrome & Fibromyalgia

http://www.prohealth.com/library/showarticle.cfm?libid=8441

Lyme and the “axis of evil”:  http://www.medscape.com/viewarticle/586226

Clinical trials validate the severity of persistent Lyme disease symptoms. 

http://www.ncbi.nlm.nih.gov/pubmed/19013025?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=4&log$=relatedreviews&logdbfrom=pubmed

Insufficient evidence to deny antibiotic treatment to chronic Lyme disease patients: http://www.ncbi.nlm.nih.gov/pubmed/19268485?ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

Headaches  and chronic Lyme pain:  http://www.lymeinfo.net/pain.html

Read one woman’s story of her journey through Lyme disease. http://www.angelfire.com/tx3/RoseWriter/

Inexpensive Drug Appears To Relieve Chronic Pain in Fibromyalgia, MS, Lyme Disease, etc.: http://www.sciencedaily.com/releases/2009/04/090417084002.htm

 

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