Monday, October 24

JCV

well...i tested positive.  positive to the JCV antibody test...More decisions to make...

what does it mean?  I was exposed to the JC Virus at some point in my life (not uncommon).  the JC Virus doesn't normally cause any disease in people but someone taking Tysabri is at a higher risk for developing PML (the brain infection) if they have been exposed to the virus.  The percentage of patients on Tysabri who develop PML is small, but i am still in that high risk category.  Since i tested positive, an MRI will need to be done every 3 months as opposed to 6.  That, coupled with the fact that every 4 weeks when i go in for my infusion i either see a doctor or nurse practitioner for a mini exam is the plan for increased monitoring and early detection.  If i exhibit any symptoms of PML, i will be taken off of it and then i'll need to start battling the infection.

At this point, life goes on as normal.  I have an MRI scheduled next month and i go to my neurologist in Dec.  At that point, i will decide whether to stay on Tysabri (is it worth the risk?) or move on to something else.  I'll say 1 thing right here, right now.  I CANNOT go back to injecting myself, so...

After getting the results and everything sinking in, i had some "why me" thoughts and sadness started creeping in, but i quickly pushed them to the side and moved on.

ARGH!!!  did i mention that i hate MS??  i do!

5 comments:

  1. Stax girl, stay strong and keep smiling.

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  2. Hey Stacey,your strength is unbelievable!! I think that you are one of, if not the greatest, personalities in my life thus far and you r someone that I want in my life for always, just call my name, (so that I could hear , of course, lol), and I will be there. Thank you for being the wonderful person that you are, you are truly an inspiration!!!

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  3. thanks :-) I'll be sure to holler.

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  4. It helps to blog, huh? Maybe just a little...ya think. I can't believe you've been doing this since 2009! By the way I have the JC virus too.

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