The Disabling MythS of MS©2005  by  Eva Marsh MEng BSc 

    MY funny symptoms began the summer I was eight years old. The doctor said it was just my imagination. When I was sixteen, I lost, then regained the sight in both eyes. The family doctor told my parents that I did too much reading.  But when I woke up paralyzed from the neck down in 1967, doctors wasted no time confirming the diagnosis - multiple sclerosis. They told me that I would never recover, to get my affairs in order because I didn't have long.
   Somehow, I knew I'd be alright. I had two beautiful little girls to raise and I decided that their lives were not going to be ruined because of my problem. They said I was  in denial. My girls were one and two years old.

    We played games together. We crawled around the apartment, sang songs, laughed, and had lots of naps! 
    This gave me movement and the rest that I desperately needed. As I began to recover, I started to do more, and within three months I was fully recovered and ready to return to work. 
    In 1967, I was a junior lab technician in the Pharmacology research laboratory at the Veterinary College in Guelph, Ontario, Canada. Curious about the science and history of ms, I decided to see what the medical library had to offer. 
    My efforts were rewarded.  I soon found the first research published on repair of myelin, by Dr Mary Bartlett Bunge (Bunge et al 1961.) Myelin is the nerve covering that is damaged by disease activity of MS. 
    Using adult cats (the same biological class as humans - large mammals), Bunge made electron microscope slides of damaged spinal cord tissue. After 64 days, there was evidence of some stage of repair in all the damaged tissue. Bunge also observed, that by this time, the condition of the animals not sacrificed for the study, was back to normal! 

    And so began my review of history and research that continues to the present. When I hear about all the advances that have been made, I shake my head. In my review of 300 years of information, I see that in each generation, the same limited view is applied - using the latest technology and terminology. When we go round and round the same territory and find no way out, we need to have a good look at the basis for investigation. In 42 years of reading, I have found that in the 21st century, what we believe are facts about multiple sclerosis, are - Myths!! 

Myth # 1 -  expect progressive decline ... 
    Two or three hundred years ago most people recovered from the strange symptoms that we now call multiple sclerosis. To the medical system emerging from the Dark Ages, the only explanation was hysteria, and the label, "hysterical paralysis" was applied. 
     Recall the history of the society of the times - most people worked in agriculture, factories or service. There was no concern for the "unwashed masses;" if they didn't work, they didn't eat. So these people had to recover or starve. 
    Those who could afford care and treatment "declined progressively." Miracle treatments of the day were mercury and arsenic. The system was entrenched in the myth of alchemy and didn't consider the possible negative side effects of untested chemicals. 
FACT - Recent papers by Romberg(2004), LeBolt (2004) and Patti (2003), observe that lack of movement and toxic drug side effects are far more damaging than the disease process. Negative side effects are ignored or explained away as more symptoms. 

Myth # 2 - little chance of recovery ... 
    The "unwashed masses" were beneath consideration, and their recovery was ignored. Attention was focused on those who could avail themselves to the treatment of the day. 
FACT - Prior to pressure for early diagnosis for drug treatment, doctors waited until three significant episodes of obvious symptoms had occurred before making the diagnosis. Many recovered from the experience of one or two episodes of funny symptoms and went on to live out their lives with no further problems. 
FACT - A significant percentage of people are fully mobile 25 years after diagnosis leading to the label "benign," no matter the actual course experienced. Researchers are calling for a return to more detailed review of each history, and to slow the rush to apply the label.

Myth # 3 - there are kinds of ms ... 
    In modern times, we attach labels to what we perceive, and recovery, like mine, is explained away as "the mild kind." Being blind, paralyzed several times and experiencing assorted other symptoms never felt very "mild to me!"

    Even though careful observers through the centuries have noted the affect of personality on the progress of the patient, in modern times, we still ignore the power of our beliefs, the link between mind and body. The Mediaeval church dictated separation of spirit and matter, ie mind and body ... the paradigm persists. 
FACT - centuries of dissections, autopsies and, even modern MRI scans, show no relation between the condition of the patient, 
and the damage to myelin in the brain and spinal cord. In fact, recent research questions whether MRI serves any useful purpose in diagnosis, or monitoring of the course of ms. 
    "Kinds" are labels that simplify discussion of observed clinical condition. I have never found research proving the pathology of the supposed "kinds," so please inform me if you can provide me with such references.

  
Myth # 4 - in pregnancy ms is not active ... 
   There are journal articles claiming that pregnancy is dangerous and accelerates the disease activity, and there are articles claiming that the disease process is dormant during pregnancy ... take your pick. 
Advice to patients depends on perceptions of physicians. 
FACT - What we believe affects our wellness. Read Letters From Readers for some first hand experiences. 

Myth # 5 - ms is a chronic inflammatory disease 
    As research progressed to the study of viruses and bacteria, researchers decided to create a virus they believed would act like ms in laboratory animals and this they believed could help investigate the course and action of the ms virus. This virus  -EAE - experimental autoallergic encephalitis, was designed to present the symptoms of multiple sclerosis, as perceived after generations of observers focused their attention on progressive decline in patients. (Myth #1)  EAE is a chronic inflammatory process and results are taken as valid for the ms virus. It has been forgotten that EAE is a designed process, and is NOT MS! 
FACT - MRI and autopsy studies have shown that there can be long periods in which the disease is inactive, ie stops itself, with no evidence of inflammation. Interferon is a class of soluble small proteins that inhibit VIRUS multiplication; interferon is  produced by almost any animal virus - so interferon drug therapy is thought to be directed to stopping virus activity ... 

Myth # 6 - ms is an "autoimmune disease" ... 
FACT -  With the many epidemics of the Middle Ages it was observed that while many die, some people were not affected, and others were affected but recovered. Thus began the use of the term "immune" defined in Dorland's Medical Dictionary as "being highly resistant to a disease because of the formation of antibodies or the development of cellular immunity, or both, or, as a result of some other mechanism, as interferon activity in viral infections  ... an immune individual."
   With the development of vaccinations, a new term was required to distinguish natural immunity, and immunity due to vaccinations ... and the terms "immunized" and "self-immunized" were born. 
   Moving along to the Age Of Technology, the term "self-immuized," became "auto-immune", and the term "Immune System" made its appearance to describe immunity.

    The term "auto-immune" began to take on the meaning "directed against the body's own tissue!!" even though Dorland's Medical dictionary defines, "Auto" as a prefix denoting relationship to self."

I find it curious that when we have a reduced immunity, or are not immune, we are considered to be in the process of destroying ourselves from within!! How did the meaning get twisted?? 
And I am still looking for research that proves the AUTOIMMUNE THEORY ... 

Myth # 7 - "embryonic stem" cells will fix everything ... 

Exciting update!! by Brian Handwerk
for National Geographic News
October 8, 2008
Scientists have derived potentially therapeutic stem cells from adult, human testicles—a development that may eventually make new medical treatments possible while avoiding moral dilemmas.
 FACT - In the 60's, before the label "embryonic stem cell" was applied, physiology books described "undifferentiated cells" that respond to the instruction of the local cell population to generate healthy new cells for repair and maintenance. Experts believed that human embryo held the secret to activating these undifferentiated. 
   These cells have been identified in adults - as well as in embryos. Stem means - to originate, derive, or be descendent. No matter what we call these cells, found throughout the body, they hold the answer to healing.

    In the first CD of her series about the Body as the Subconscious Mind, Dr Candace Pert says that doctors would rather use each others' toothbrushes than use each others' "terms."

   Research has already proven the beneficial effects of adult "embryonic stem" cell transplants. BUT recent work by researchers at the University of Rochester, using  embryonic stem cells found that transplants did indeed cure rats of a Parkinson's like disease, but, brain tumors began to grow in EVERY animal treated! In other projects, leukemia has resulted. The abstract is available at http://www.nature.com/nm/journal/v12/n11/abs/nm1495.html

see also Me and My Stem Cells - Why the stem cell controversy is a non-issue!© 2005 

Myth # 8 - MRI is conclusive ... 
    When doctors suspect ms, an MRI (magnetic resonance imaging) scan will be arranged. This has become the preferred method for confirming diagnosis of MS, as it is believed to detect clinically silent lesions in the brain. 
FACT - Unfortunately, the scan is a hopelessly inaccurate method of detection, and researchers have discovered that lesions - even lots of them in the brain - don't necessarily indicate the presence of MS. 
    This striking piece of new research published in the British Medical Journal, 2006; 332: 875-846, suggests that medicine doesn't have any reliable tools at its disposable to detect MS. Worse, it means that many cases of MS aren't MS at all, and patients and their families go through years of hell when there isn't much wrong with the person.  In this study conducted by The MRC Health Services Research Collaboration in Bristol, 29 studies on MRI and MS were reviewed . 
     It was discovered that the scan could not rule out ... or rule in, come to that, the possibility of MS. The presence of dark spots presumed to be brain lesions, didn't indicate MS, either. Even patients with 10 or more brain lesions didn't develop MS, the study found. Based on WDDTY e-News Broadcast - 27 April 2006. 

Myth # 9 - DRUGS are the answer ... 
   British Medical Journal, 2006; 332: 875-879. Penny Whiting, Roger Harbord, Caroline Main, Jonathan J Deeks, Graziella Filippini, Mathias Egger and Jonathan AC Sterne, Accuracy of magnetic resonance imaging for the diagnosis of multiple sclerosis : systemic review,
... not all patients who experience a first attack will develop the disease and currently no treatment has been shown to delay conversion to clinically definite multiple sclerosis or impact on long term disability.

    Long ago, I decided what I wanted in life, and here I am at 65 years of age, a happy mobile grandmother sharing my life with people around the world. The last doctor I fired was perplexed that I have no symptoms and continue to refuse drugs. She told me she believes that I still haven't accepted the diagnosis, and she is sure that I am hiding my symptoms!"

     What do you want? Go for it!