Thursday, April 18, 2013

Medicine fail

Hello dear sparklers!

I left the blog post the other day in a ... statement as I had just found out some news from the doctor that wasnt so lovely.

The doctor had called to let me know my blood result came in positive for a JC virus antibody.  What this means (in so not medical terms) is that the medicine I was being infused with, Tysabri, is now being attacked by my body.  My body is creating little cell-men that arent alowing Tysabri to do it's thing.  It is rising against it.

There is a silver lining: at least we know something.  

The hardship is again there is a medicine that doesnt work.  Again I have to go through the process of determining what to do next.  Again I have to start over. 

The great thing about Tysabri is that it really helps with lesions in the brain, where my most active and serious ones are.  That is another frustrating point for I dont believe there is another medicine that not only helps slow down the progression but also helps heal lesions.  Which is why we were so hopeful and took the risk with Tysabri.

All to find out that my body is rejecting it.

It's funny in a way.  I had all the tests that could be done the past week.  And everything came back normal range.  I'm a healthy 26 year old woman.  

Im so healthy in fact that I have an EXTREME immune system.  

So extreme that it attacks my own body (hence creating MS). 

So extreme that it attacks foreign objects (medicine to help with MS).  

It's funny and then it's not.  It doesn't make sense.  

All this is another awkening as to why we need more research, more medicine and a cure.  

No person should be perfectly "healthy" by all standards but spend days in bed, napping and not moving.  

MS needs to be more of a cause.  It needs to be more of a movement.  And that is why I am so open about my experience, just for these reasons.  Also to let other MS sparklers know that "you're not alone!".

Where we go from here...for the next week or so I am to journey my day to day symptoms and such.  Then end of April we will meet and discuss and turn to new plan.

It's been a year.  I'm running out of options.  Which is why the help to promote the orange of MS awareness is SO important.  

Keep fighting on Sparklers!!

PS: On a side note, Mom is doing well and healing. She is finding the use of my old walker quite useful and is getting up and around a few times a day.  Progress!

Love, Eliz