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.

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. 

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.

Living Well

I like to try natural remedies for pain, depression, and anything else associated with mind, body and spirit.  I've tried yoga a few times but some of the poses make me dizzy.  Anything that causes me to bend down or put my head below my waist is a huge problem for me.  I was cleaning my shower the other day and when I stood up after being on my knees for about 15 minutes, I got dizzy.  I'm not sure what that's all about.  Now Pilates is a different story.  I have a video called 10 minute solutions.  There are 5 parts, each 10 minutes long.  I use 3 of them, pilates for your stomach, arms and thighs for a nice 30 minute workout.  Not saying I do it every day or even every other day.  I gotta work on being consistent.

When it comes to my mood, I'm learning a lot about essential oils and the amazing effects they have on our body.  For instance, lavendar is supposed to be good for relieving emotional stress.  I have used lavendar for many things and it does appear to have a calming effect.  I like to burn the oil in a diffuser.  I also like to spray it on my pillow. Today was stressful and my shoulders were tense but after rubbing some lavendar mixed with olive oil on them, my muscles have relaxed and I feel better mentally too. 

Did you know that some essential oils actually have antiviral and antibacterial properties.  I use lavender and tea tree oil for anything pertaining to fungus or bacteria.  I like to use it on my scalp to help fight dandruff which is generally caused by fungus.  If you look at the active ingredients for head and shoulders or just about any dandruff shapmpoo, you will see pyrithione zinc which is an antifungal.  If you want to try a more natural approach, add some tea trea oil and lavendar to your shampoo or hair moisturizer.

As for fatigue, I haven't tried anything for that other than making sure that I get enough sleep.  Sometimes that doesn't make a difference.  We know that MS relatated fatigue also known as lassitude is the most common problem for people with MS.  I just try to rest when I need to and I try not to take on too much. 

Mentally I am very forgetful and sometimes that plays on my emotions.  It can get me down when I can't remember what I want to say or when I forget something that was told to me an hour ago.  I think that's my short term memory.  I believe St John's Wort is supposed to help with memory problems but I have never tried it.  For my memory problems, I excercise my brain by doing puzzles or playing the piano.  I used to play a video game appropriately titled "Brain Games" but after doing that for a few months it got boring.  I have a short attention span.

I like to take vitamins and antioxidants or at least eating the foods that contain them.  I know that certain foods play a role in our physical and emotional well being.  When my family get's sick, we prefer to take zinc and vitamin C instead of over the counter meds.  I like to make my own special teas and yes, they do actually work.  When I was little, my Mom and Grandma would always boil citrus fruits such as oranges, lemons, and grapefruits whenever someone came down with a cold.  It worked very well and I now do it for my family.  We call it vitamin C tea.   It shortens the duration of any cold.  I add ginger and sea salt too.  Add brandy to make a hot toddy and knock that cold out. Of course I only do that for me or my husband.  Green tea is a great antioxidant.  Blueberries are also great antioxidants and I like to add them to my oatmeal. 

I must confess that I love sweets and I drink about a cup of coffee every day too.  My teeth are not as white as they should be.  As a matter of fact, they're not white at all.  They're more like "mother of pearl" if you know what I mean.  I read that if you rub the inside of a banana peel on your teeth for 2 weeks it will lighten the color of your teeth.  Hmmm, I'm not so sure I even want to try this one.  Well actually I did try it once and I didn't like the way it felt.

As for my emotional well being, prayer and reading God's word has always helped me.  Laughter is also something that I swear by.  It makes me feel so dang good.  Tee hee hee.

Praise Report

Yesterday I got the results of my latest MRI.  The doc showed me and my husband a film that had a combination of every MRI that I've had from the beginning to now.  My most recent MRI shows no new abnormalities and that my previous lesions appear to be stable or slightly less pronounced.  Maybe the pain that I was feeling in my brain had nothing to do with lesions forming after all.  That's great news considering that I have been off treatments for over 3 months now.  At this point, I will restart treatments because 4 months appeared to be too long w/o treatment last time. 


I also received an e-mail from a Tysabri coordinator who wants me to speak at their next dinner here in Reno on October 20th.  I will be joined by a neurologist by the name of Vincent F. Macaluso from New York.  He also has MS and Tysabri is his current treatment as well.  I'm looking forward to this and I will be sure to blog all about my experience. 

This Is So Not About Me

You know what they say, "Everything happens for a reason".  I believe having MS is a way for me to learn more about life and see things in a different perspective.  I like to help people understand this disease.  I never asked God "why me" because this is so not about me.  Things happen to people all the time and it really is true that God will never put more on you than you can bear.  He knows what each one of us can handle and He knew that I could handle MS, with Him of course.  So I am on a mission.  I haven't had the opportunity to speak about MS in public since the MS Walk in May.  I signed up to be an advocate through the MS Society and I never heard back from anyone so maybe it wasn't a good fit.  Who knows.  That won't stop me from getting my message out, even if all I do is blog about it.


It's been almost 3 months since I have not received Tysabri.  Honestly, I have been doing wonderful.  Better than I expected.  I haven't had to work from home as often in these past 3 months as usual.  Today I have to get an MRI of my brain before I go back on Tysabri so my neurologist can tell if I have developed any new lesions in the past 3 months.  I can say that I most likely have because I can feel it.  I have mentioned this before.  The pain that I get in my head is different than a headache.  It's a shooting pain that will only last for a few seconds.  Don't you think that if scar tissue is developing in your brain you would be able to feel it?  It's like having little tumors all over your brain.  Lesions are also referred to as tumors or plaques.  I don't think I will ever be able to fully explain it but we'll see what the results of the MRI show.  I will be sure to post something as soon as I find out.


Another thing that I have noticed about myself is that I am constantly clenching my teeth.  I catch myself doing it all the time and I try to relax my jaw.  I will have to do some research about that because I grind my teeth in my sleep which is something that I have always done so I am not sure if the clenching is related to MS or Tysabri or something random.  My short term memory is a little worse.  I am able to talk better now.  I'm not stumbling over my words as much.  That's important since I want to be able to use my voice and talk about MS as much as I can and I do find myself educating the people around me.  I don't mind when people ask me questions about MS.


Please pray for me.  That is the best thing that anyone can do for me or anyone.  God is using me and I hope that my experience will help others with MS realize that no matter what, there is a purpose for their lives.  You do not have to be embarassed about MS.  I want to help family members of those with MS understand that they need to encourage their loved ones struggling from the many head to toe symptoms of MS, even though most of the time you can't tell by looking at them, unless they are in a wheel chair.  I want to help people understand that a person's handicap or illness doesn't have to be obvious.  Don't be narrow minded or shallow.  MS is very difficult to diagnose most of the time because there is a giant list of conditions that mimick MS.  A lot of research is being done and even if we never find a cure, we will be ok.  God is in control.

Immune Health

My neurologist keeps telling me that the worst thing I can do as someone with MS is take measures that boost my immune system.  I used to be serious about natural antioxidants such as vitamin C, zinc, blueberries, pomegranate, Acai berries and the list goes on.  For a while I wondered if I overstimulated my immune system and caused it to backfire on me by attacking my Central Nervous System but I don't really believe that is the case.  I have read information that supports my docs theory about our immune system being the main culprit regarding MS and it's not such a good idea to enhance it.  Especially since the main goal of MS therapy is to suppress the immune system.  On the other hand, I recently read an article in a newsletter for people with MS that states the opposite.  

"Despite the damage the confused immune system may be causing to healthy tissue, it is important for it to still function as the body's system of defense against infectious diseases and cancers.  A well-balanced diet of low-fat foods that are high in fiber and antioxidants has been shown to have beneficial effects on the immune system."  Shared Solutions--Healthy Eating To Boost Your Immune System

My take away from both points is this:  Even though my immune system is attacking me, I still need to take measures to protect myself from free radicals and carcinogens while I am on treatment.  Healthy foods such as avocados, nuts, olive oil, salmon, brown rice and brans can help me to maintain total-body health.  My hope is that while the treatment calms my immune system, diet can address the parts of my body like cells, tissues and other systems that still need defense, while hopefully avoiding the attack on my Central Nervous System.

At the end of the day I know I need to take care of myself and educate myself on a regular basis when it comes to the balancing act of trying to keep MS in check.