About MS

“I’m not drunk, I have MS”

 

• Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain and spinal cord. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another.
• As part of the immune attack on the central nervous system, the myelin sheath that surrounds and protects the nerves is damaged, as well as the nerve themselves. The damaged myelin forms scar tissue (sclerosis), which gives the disease its name. When any part of the myelin sheath or nerve is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing a variety of symptoms.

The Four Types of MS

People with MS  typically have one of four disease types – each of which can be mild, moderate, or severe.

Relapsing-Remitting MS  People with this type of MS experience clearly defined attacks of worsening neurologic function. These attacks—which are called relapses or flare-ups — are followed by partial or complete recovery periods (remissions), during which no disease progression occurs. This remission can last from months to years. Approximately 85% of people with MS are initially diagnosed with relapsing-remitting.

Secondary-Progressive MS  Following an initial period of relapsing-remitting MS, some people develop a secondary-progressive disease in which the disease worsens more steadily, with or without occasional flare-ups, minor remissions, or plateaus.

Primary-Progressive MS…this is my MS. People with this disease experience slowly worsening neurologic function from the beginning—with no  relapses or remissions.  The rate of progression may vary over time, with occasional plateaus, followed by further aggressive attacks and disability. Approximately 10% of people are diagnosed with primary-progressive MS.

Progressive-Relapsing  In this rare course of MS (5%), people experience steadily worsening disease from the beginning, but with clear attacks of worsening neurologic function along the way. They may or may not experience some recovery following these relapses, but the disease continues to progress without remissions.                

Prognosis for me? Confined to a wheelchair and bed ridden after that?  No one knows for sure.  This prognosis could change…with a  trip to Russia for HSCT.  Nothing has been shown to slow down the progression of primary progressive MS – until now.  There has been  a lot of research conducted and treatments offered for Relapsing Remitting MS (RRMS), but Primary Progressive patients are not offered any treatment.  I’ve heard the expression, ‘Diagnose and then Adios’, meaning:  We know what you have, but can’t do anything for you.  HSCT has given me hope for the first time since I was diagnosed.  I’ve never met anyone with PPMS before.  Now, I am in contact with many PPMSers from all over the world who have received HSCT, have stopped the progression of their disease, and have even had some of their symptoms reversed!

 

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