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!
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!
Stax girl, stay strong and keep smiling.
ReplyDeletei will :-)
ReplyDeleteHey 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!!!
ReplyDeletethanks :-) I'll be sure to holler.
ReplyDeleteIt 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.
ReplyDelete