I'm Positive

My current MS therapy does a wonderful job of slowing the progression of my MS but it also carries the risk of developing a serious brain disease called Progressive Multifocal Leukoencephalopathy aka PML.  Some people carry a virus in their body that makes them susceptible to this disease.  For those that do not have the virus, known as the JC Virus, there is no danger of developing this brain disease known as PML.  However, a person that is currently negative for this virus could become positive in the future.  Doctors do not know what causes it or what exposes people to this virus.  About 2 years ago, I discovered that I carry the JC Virus.  It was the result of a study for people with MS who use Tysabri as their therapy to slow the progression of this disease.

Before I ever decided to begin using Tysabri, my MS was very aggressive and out of control.  The treatment I was on at the time was not working very well.  I was having relapses every other month.  I had to go on high dose steroid treatments via IV several times.  Eventually my neurologist decided to send me to UCSF and it was there that a doctor highly recommended Tysabri because it was the most aggressive treatment for MS at the time.  And it still is.  I was aware of the risks due to an ad for Tysabri that I saw in a magazine.  The first time I ever read about Tysabri and the possible side effects, I vowed to never use that drug to treat my MS.  That was before my quality of life began to quickly tumble down hill and I felt completely out of control.  Eight months after being diagnosed with MS, I found myself facing the decision to take a risk.  It was a little difficult at first because I never imagined facing a decision like this less than a year after being diagnosed with MS.

I have been on Tysabri for over 4 years now and I'm still doing very well.  Tysabri doesn't stop symptoms of MS, let me make that clear.  I still experience numbness in my right foot that increases when I'm stressed or tired.  I still have to take nerve pills to prevent me from feeling all the nerve activity in my body.  Fatigue has been a huge issue for me since my diagnosis but I have good days and bad days.  My short term memory is not what it used to be but I know I can do certain things to exercise my brain to help me not forget everything.  Overall, I am positive.  Even though tests show that I am positive for the JC Virus, that's not all I am positive for.  I'm positive about my future with MS.  I have MS but MS does not have me!

My MS Theory

MS is considered to be an autoimmune disorder.  I believe that all autoimmune disorders are a result of a virus (not bacteria) that has invaded your body for an extended amount of time giving it a chance to cross a barrier and manage to mimic specific cells, tissues, and/or organs in our body.  In the case of MS, I believe some sort of virus crosses the blood brain barrier to enter the central nervous system.  Our immune system is aware of it's presence and in it's attempt to destroy the virus, our nerve cells become collateral damage.  Collateral damage is defined as  "[the] unintentional damage or incidental damage affecting facilities, equipment, or personnel, occurring as a result of military actions directed against targeted enemy forces or facilities. Such damage can occur to friendly, neutral, and even enemy forces.  An autoimmune disorder is caused by the body producing an inappropriate immune response against its own tissues. Sometimes the immune system will cease to recognize one or more of the body's normal constituents as "self" and will create autoantibodies – antibodies that attack its own cells, tissues, and/or organs. This causes inflammation and damage and it leads to autoimmune disorders. In the case of MS, RA (Rheumatoid Arthritis), Chron's disease and other autoimmune diseases, our bodies are being attacked by friendly fire (immune system) in an attempt to get to the enemy (virus).

MS therapies are designed to weaken the immune system or modify the disease.  Tysabri, my current choice of therapy, prevents white blood cells from crossing the blood brain barrier where they attack nerve cells.  This helps to slow the progression of MS.  The downside to this gives the JC virus an opportunity to cross the blood brain barrier as well and cause worse damage than the white blood cells.   This causes a rare infection of the brain called PML (Primary Multifocal Leukoecephalopathy) which I have written about in some of my past postings.  Tysabri is a bit of a double edged sword but a risk that I am willing to take until a cure for MS has been found.  That is why I am so passionate about sharing my world with the world.  I believe a cure for MS can and will be found and the more awareness we raise about MS, the better off we will be in creating a world free of MS.

The human body is a magnificent wonder of many systems designed to collaborate and work together for the common good. Like soldiers in the military the cells in our body do their best to protect human life.  But as we know, nothing or no one is perfect except God who knows the plans that He has for us all.  Whether we have MS, Cancer, ALS or any other disease of the body, put all your trust in God, who causes ALL things to work together for the good of those who love Him.

Risky Business

Tysabri is my current MS therapy.  As an African American MS tends to be more aggressive for us so we must be equally aggressive with our treatment.  Tysabri is the most aggressive treatment that I am aware of.  Since it is so aggressive, there is a down side of course.  With it comes the risk of developing a fatal brain disorder called PML caused by JC Virus or JCV. 

JC Virus was first isolated from the brain of a person suffering from Hodgkin's disease & PML .  PML tissue contains virus-like particles in the nuclei of abnormal oligodendrocytes, which is the pathognomonic cell of the disease.  JCV will only grow in a very restricted range of cells, mainly in the brain.  JCV is known as a DNA virus that maintains a latent infection in the body which can be reactivated from time to time.  The oligodendrocytes in the peripheral zone surrounding an area of demyelination are grossly abnormal.  The nuclei of abnormal oligodendrocytes are packed with JCV.  Typically, PML evolves gradually, with impairment of mental function and disturbance of speech and vision.  Movement may also be affected.  The disease then progresses rapidly and patient is severely disabled, eventually becoming demented, blind, paralyzed and finally, coma and death.

Antibodies of JC virus in the Cerebral Spinal Fluid (CSF) is rare but if detected, it suggests active multiplication of JCV in the Central Nervous System (CNS).  Cytarbine is an anti-viral drug that has proven to be somewhat effective against PML.  Out of 8 cases, long term improvement was only seen in 2 cases.  Another case had a dramatic response within 24 hours but was not maintained.  Rapid progression was halted in 1 case but the neurological damage was severe.  The other 4 cases did not show any improvement.

Our immune system routinely keeps the virus in check.  Anyone with a weak immune system run the risk of developing PML.  Life is risky every day.  I am too blessed to be stressed.