Monday, June 20, 2011

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.

Tuesday, June 7, 2011

Patient's Like Me--Tysabri Thread

I was updating my profile on "Patient's Like Me" and I came across this posting that I added over 2 years ago before I decided to start taking Tysabri:

Hi, I am interested in hearing from anyone that is currently receiving Tysabri.  My MS has become very aggressive.  I have developed over 10 lesions in my brain within 7 months of being diagnosed.  I also have 4 lesions in my spinal cord.  I am currently on Copaxone but it's not aggressive enough so my doctor at UC San Francisco wants me to consider Tysabri.  I am trying to get as much info as I can from actual patients.  Please help.  I am a little afraid, at the same time, if I don't do something, I'm sure that I will become more disabled.  Right now my feet are numb and I get sharp, shooting pains all over my body.  I am also very scatter brained and forgetful.  I know a lot of you can relate.  Any info that you have would be greatly appreciated!

Here is a link to the entire thread and some of the responses that I received from other patients:

Saturday, June 4, 2011

Symptoms plus Faith = My MS

Last week I began experiencing a new symptom.  I would get this excruciating jolt of pain on the right side of my face, between my temple and my cheekbone.  When I say jolt, that's the best way to describe it.  Like being hit in the face.  It was gone as quickly as it came but it would happen 2 or 3 times within a few minutes apart.  Like labor pains but in my face.  This went on for 3 days straight.  It started on a Thursday evening between 7:30 p.m. and 7:40 p.m.  I was at home sitting in front of the computer and it happened 3 times within that 10 minute time frame.  The next day it happened again between 1:15 p.m. and 1:20 p.m.  This time I was at work and it happened twice within that 5 minutes.  The following day, I was actually driving and it happened twice between 2:30 and 2:45.

Three days later I had a routine appointment with my neurologist.  I told him about this new symptom and he wanted to know if I was doing anything that would have triggered it.  The only thing I was doing each time it happened was sitting down.  Maybe straining my eyes while on the computer or when I was driving had something to do with it.  He asked if I had considered trying the new drug, Gilenya?  I told him, "I read all the pros and cons and I didn't feel led to change anything at this point."  This drug is still too new for me.  It hasn't even been a year since it was approved by the FDA.  With Tysabri, my current treatment, I receive it once a month by IV.  I am supposed to take a drug holiday every 18 months.  I would stop receiving it for 6 months straight, then go back on for another 18 months.  The first time I did that, I didn't last for 4 months w/o therapy.  I had at least 2 relapses and they lasted for at least a month each time.   By month 5, I was back on my treatment.  My brain scan shortly after that showed new lesions but they were not active (lit up on the MRI films) which led my doctor to believe that I developed these lesions when I was not receiving treatment.  May of this year marked the 12th month since I went back on treatment.  I suggested that we try 12 months on and 3 months off and he agreed.  So I will not get treatment beginning this month through August.

When taking Tysabri, drug holiday's are suggested to help your immune system recover because even though all MS treatments suppress your immune system, Tysabri is a very aggressive form of treatment used especially for those with a more aggressive form of MS.  Anything that suppresses your immune system, whether it be a drug or an illness can be dangerous because you are more susceptible and vulnerable to opportunistic infections.  That's where one of the most dangerous side effects of Tysabri comes into the picture.  "PML".  You can find my posting about "PML" in my archives, titled "Risky Business".

I have talked to several people with MS who are afraid to receive Tysabri treatments because of the risk.  They asked me what was the deciding factor for me to go on this treatment.  From the first day of my diagnosis, I took Copaxone for 6 months.  I had to receive a shot every single day and my condition was getting worse instead of better.  When I went to UCSF ( Univ of San Francisco), Dr Cree suggested Tysabri to respond to the aggressiveness of my MS.  It was a family decision.  We watched the video that I was given and read every pamphlet as well.  The most important thing we did was pray about it.  We had everyone in our family and our close friends praying about this.  Finally, God led me to step out in faith by trusting Him to protect me and go for it. 

Faith is my strongest gift.  For those that don't know God, you will never understand my reason for doing a lot of things.  You will never understand how I know it's God.  You will wonder how do I hear from God?  It's not audible by the way.  It's more of a conscience thing.  I can try to explain these things to you, but without faith, you will not understand.  All I can tell you is to ask God to give you the desire to know Him and have a relationship with Him.  To give you understanding and knowledge so that you can learn how to trust Him.  Without God, I would not have the quality of life that I have to this very day.