“A peculiar disease state.” -Robert Carswell, 1838

“…a chronic immune-mediated disease of the central nervous system.”-Charles R. Smith, Randall T. Schapiro, 2004

“MS is like an affair that my wife doesn’t understand or fully know about—it’s impossible for me to fully share this relationship with anyone.”-Anonymous, 2007

“…the feeling of disability had more to do with my mind’s feelings about my body than the reality of my physical body.”-Elizabeth Forsythe, 1988

“…I’m happier now than I have ever been before and live a remarkably unlimited life.”
-Shelley Peterman Schwarz, 1999

“The disease touches everything I do and affects my body from head to toe…as my body weakens, my spirit grows strong and occasionally soars.”-Richard M. Cohen, 2004

“What is MS?” seems like a simple question.  However, answers are extremely varied.  Some are emotional and personal, while others are objective and clinical.  The range of answers covers the range of human experience.  The answer depends very much on the perspective of who is responding to the question.

The Scientist
From a scientific perspective, MS is generally viewed as a disease of the immune system and the nervous system.  It is believed that the immune system attacks the brain and spinal cord (the central nervous system) in such a way that there is inflammation that damages the insulation-like covering (myelin) on the nerve fibers.  This damage, known as demyelination, blocks or slows nerve conduction and thus interferes with neurological function, such as strength and sensation.

More recent studies indicate that MS is more than just inflammation.  It is now recognized that, in addition to injury to myelin, there is damage to the nerve fiber itself (the axon).  This injury occurs through a process known as degeneration.  Thus, scientifically speaking, MS is characterized by both inflammation and degeneration.

The Clinician
There are many different clinicians who care for people with MS—physicians, nurses, rehabilitation specialists, psychologists.  These clinicians have their own views of the disease.  To optimize the diagnosis and treatment of the disease, these clinicians attempt to translate scientific understanding into clinically useful information.

Recently, this has meant recognizing that the main clinical features of MS are closely related to the underlying nerve injury identified by scientists.  That is, MS attacks, the episodes of worsening that occur in MS, are caused by inflammation, while progression, the slow decline over time, is due to degeneration.  This has led to major advances in recognizing that MS may not just be a single disease but multiple diseases, some of which are more inflammatory and others more degenerative.  There have also been advances in developing treatment strategies that target both inflammation and degeneration.

For other clinicians and me, there are emotional responses to the disease and those who have it.  For me, I simultaneously hate MS and am intrigued by it.  The biology of the disease is fascinating, but the effects that it may have on the nervous system are disturbing and angering.  I respect and admire those with MS.  They have inspired me with their resilience and resourcefulness—they show me, on a daily basis, the power of the human spirit.  I have learned much about life from caring for people with MS. 

The Person with MS
People with MS have extremely varied views of the disease.  I have heard many people describe what the disease means to them.  Some of these views involve anger and expletives.  Others are accepting and actually positive.

One’s views of MS often changes over the course of the disease.  At the time of diagnosis, there may be denial, sadness, or anxiety.  There may also be relief to have an explanation for one’s symptoms.  At some point, many people with MS do experience sadness and anxiety.  There may be soul-searching, including an evaluation of oneself and one’s relationships. 

Some people find that MS motivates them to recognize and focus on the positive aspects of their lives.  MS may taps into all of one’s emotional resources and also require that one develop additional resources.  The physical severity, such as the amount of weakness or walking difficulty, often does not correlate with the emotional impact that MS may have. 

Spouses, Families, Caregivers, and Friends
MS may significantly affect one’s relationships.  Existing relationships may be strengthened by the disease--they may also be challenged.  MS may lead one to develop new relationships.  For relatives, caregivers, and friends of those with MS, there may be feelings of caring and deepening of the relationship—there may also be frustration and feelings of not being adequate.

You
Much can be learned from sharing experiences.  This website community is an excellent place for people to share their views.  What is your answer to the question: “What is MS?”  Please post your response in the comment area below.  

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