results – Multiple Sclerosis & Me

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!

oh boy…

today is the day that i should find out the results of my JVC virus antibodies test. that’s the virus that causes the brain infection when u’re on Tysabri. The virus is in all of us, but it’s dormant – Tysabri wakes it up! (of course). anyhow,

if the test is positive and the antibodies are present, more decisions will need to be made…do i stay on Tysabri with a greater chance of developing the brain infection? they will monitor me by doing an MRI every 3 months instead of 6…do i switch to yet another disease modifying drug?
if the test is negative, life goes on as usual.

of course, me being me, i have a feeling that the test is positive. I can’t help it sometimes, i tend to expect the worst and be pleasantly surprised when things work out well.

oh well…stay tuned!

I misspoke! It’s the JCV or JC Virus…

More Resultssigh

Did i ever mention on this site that I hate having this disease? Well i do…i really do.

I went to my neuro yesterday to get the results of those 3 MRIs -brain, upper and lower spine. Good news is that I have no additional scarring on my brain. Bad news is that i have 3 lesions on my spine. Now, in all fairness i can’t really classify that as total bad news. It explains why I am having so much trouble walking i s’pose. The unfortunate thing is that this is the first spinal MRI i’ve ever had so we have no baseline to measure against. He is concerned because I have to admit that it has gotten progressively worse over time. It used to be that i would have problems after walking or standing for a long time; now it’s almost always ALL the time regardless. PT helps it does, but it doesn’t negate the fact that the walking problems have progressively gotten worse. He is concerned (and he raises a good point) about what state i might be in in 6 months. Anyone around me regularly can see how it’s gotten progressively worse. So, where does that leave me? he wants to change my meds…

Good news/bad news. The good news is that i will no longer have to take a daily shot (YEAH BABY!!!). The bad news is that the one he would prefer me to go on has a side effect of a brain infection – SHEEEEIT!!!! It’s a much more aggressive medication than the one i’m currently on and i’ve heard great things about it but… really? do they always have to have shit hanging over ur head like that? can’t something just work FOR u without all the bloody side effects??? It’s also an IV infusion so I’ll have to go into his office once a month to get my infusion – HAPPY HAPPY JOY JOY!!!! The cost? haven’t a clue but once again, I have to wait to be approved by the insurance company and everybody else in the world before i get started.

The brain infection is rare (thank God!) and it is more likely to occur in patients with a compromised immune system. So they do extensive blood testing and TB testing before you are even considered as a good candidate for it. I’ve done research and in this instance, i believe that the benefits outweigh the risks and I’m willing to give it a try. He said that we can try it for 6 months and see how it’s going/how I feel and re-evaluate if necessary.

Did i ever mention that I really hate having this disease? I know that it’s not the worse thing that can happen to me and for that I’m grateful, but i really do hate having it.

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