Tuesday, October 25, 2011

Stratify-2 Clinical Trial

Biogen Idec, the makers of Tysabri has developed a blood test that measures antibodies to JCV.  About 70 to 90 percent of the people in the world have JCV in their system but it's only dangerous when your immune system is weak or suppressed.    The purpose of Stratify-2 is to understand whether an MS patient who has antibodies to JCV is at higher or lower risk of developing PML.  Details about JCV and PML can be found in my previous posts such as Risky Business or My MS Theory.

Blood samples were collected from at least 8000 patients in the US with MS.  This includes me.  I am participating in this clinical trial and my blood was drawn last year and again today.  The study lasts for 2 years so I have one more draw next year to finish this study.  My blood is sent to a lab for testing and it will be kept in long term storage for future JCV research or until destroyed by Biogen idec.  Future testing related to JCV research may be conducted on my samples.  Last year I discovered that I tested positive for the antibodies to JCV.  The pros and cons of taking Tysabri were considered when I chose Tysabri for my MS therapy.  The risks were weighed before I knew that this virus was dormant in my system.  It doesn't change anything for me.

I will continue to keep my doctor informed of any new or worsening symptoms and evaluate things as they come.  Tysabri has changed my quality of life for the better.  I took a leap of faith and I know that God did not give me a spirit of fear but power, love and a sound mind.  What that means for me is to live is Christ and to die is gain.  My purpose in life is to bring glory to God the best way that I know how.  I will always pray for His guidance, knowledge and wisdom in everything that I do.  My decision to choose Tysabri was with much prayer and acknowledgement of God's purpose for me.  He cannot use me if I am unable to have life and have it abundantly.  All my faith is in Him and Him alone.  When I die, it will not be when or how I choose but I trust God to keep me and sustain me for as long as He sees fit.  Then I will go to be with him forever in eternity.

Monday, October 24, 2011

Dinner and a Speech

On 10/20/11 I spoke at an MS Seminar called: Finding the right treatment for you.  My speech went very well.  I wasn’t as nervous as I thought I would be.  There were about 40 people there.  It was located downtown near the Truckee river and the setting was very nice.  I didn’t get to take pics or video.  It was pretty crowded in there.  The food was about 8 on a scale of 1 to 10.  Not only were my husband and daughter’s there with me but my mother and grandma came down from Hawthorne just to be there to support me.  The response to my speech was good.  People thanked me for sharing my story.  I just hope that people felt inspired and encouraged to take control of their MS.  I don’t like to see people doing bad when they can be doing so much better.  Through my personal story, I want people to see that they don’t have to live in fear of their choices but they do need to be wise. 

The guest speaker was a neurologist named Vincent Macaluso and I see him as a genius in the MS world.  It was good to hear things from a doctor/patient perspective.  He said that he enjoyed hearing my speech.  He has MS and is also on Tysabri.  He claims that there really is only 1 type of MS.  MS was split into 4 types in the 1860’s before they had the technology that we have.  He believes that 1 of the 4 types is not MS at all but more like Transverse Myelitis based on some brain scans that he studied and showed us.  I believe he was referring to PRMS-Primary Relapsing MS which only about 5% of people with MS are considered to have this type.  He did say there should be more studies on that.

Based on his experience with his patient’s, he believes that Tysabri is for anyone with MS as long as their immune system can handle it.  If a person’s immune system is already weak then it would not be wise to use a treatment as aggressive as Tysabri.  Not all lesions are seen on an MRI.  When you consider the size of a nerve, it takes a lot of inflammation in a concentrated area to see a lesion on an MRI.  That makes it difficult to really get a true count of lesions in your CNS.  Not only that but some people with lesions don’t necessarily have MS, such as the elderly.  I learned so much from his speech and he is currently writing a book about his research and studies.  I definitely plan to buy it.  Everything he said made perfect sense to me.  It was like he was teaching a class and I enjoyed it. 

Saturday, October 1, 2011

Advocating for MS

I am finally on my way to becoming an MS advocate.  Biogen Idec, the company that developed Tysabri, my current MS therapy, has recruited me as a speaker.  This is very exciting for me.  If you follow my blog then you know that I have been trying to become an advocate for people with Multiple Sclerosis.  I will be expected to talk about how MS affects me and why I chose Tysabri for my MS therapy.  As I mentioned before, I am supposed to speak at an upcoming dinner in October here in Reno.  I also received an invitation to a conference in Boston for MS advocates.  Boston?  That's cool but it will be in December so you know it's going to be extremely cold.  I plan to go and I'm really looking foward to learning how to be a great speaker.  

My mission is to motivate and encourage people to stand strong and take control of their health, no matter what your condition is.  Doctors don't know everything and it's very important for you to do your own research.  Write down any issues, concerns or symptoms that you have before each doctor appointment.  

I also want to be involved in government relations.  Advocating for positive changes, better healthcare and research policies. Caregivers also need more resources and tools to care for their loved ones with MS.

I want my MS diagnosis to count and make a difference in the lives of everyone with MS by learning as much as I can and sharing it with everyone however I can. 

Please ask me anything that you want to know about me and or MS.   You can either comment here or e-mail me at chocklitgirl@gmail.com.