Saturday, June 30, 2012

Hello Reality...

I just got a slap of reality in my face recently... Let's catch you up to speed.

I went to see my neuro about increased spasticity on my whole right side. So I got the whole lab results down and a full MRI done last week... and I don't have any NEW lesions... and all of the lesions are still in my brain, so that's good news. I was relieved.

I had that feeling that the increased spasticity was from the increased heat here in Texas... the heat really  messes with my MS and I just despise summer now due to my MS.

So, I got a call from my neuro's office & turns out I'm JC Virus Positive... which they said I have probably been JCV positive this whole time and my previous blood was a "false-negative".

When my neuro first brought up Tysabri to me once we learned Avonex wasn't working my deciding factor was if I was JCV positive or negative. So being told I was negative, I was like alright let's do this. And I love being on Tysabri... no side effects from the medication... no NEW activity, etc.

Now I'm like okay... there has been posted that if you are JCV Positive and you're on Tysabri (or anything that suppresses the immune system) you have a 1 in 1000 chance of getting PML. So... My feeling is... I don't want to be on Tysabri anymore... because I would rather chance getting into a flare with my MS rather than even CHANCING get PML.

I have to think about not just myself... but my family. I have two little kids that depend on me and I have to do what's best for my family... and even taking a chance of getting something that cannot be fixed and has the potential of killing me... that's selfish and irresponsible for me to do, in my opinion.

I know there are many people who are JC positive and on Tysabri that's fine.. it's a personal decision. But I'm sitting here in my mind set thinking, okay... if I continue with Tysabri... I'm not going to be comfortable sitting in that chair getting the medication sitting there wondering, okay is this the treatment that is going to cause the PML..

I know there have been trials done about low risk for those that haven't had a lot of infusions... but thats a TRIAL... that's not a cold hard fact. I mean look at the luck I have...

I have arthritis... I get diagnosed with MS... during the spinal tap and MRIs being diagnosed I get told I also have degenerative disc disease and spinal stenosis. Look at my luck... if something can wrong, it goes wrong... I'm not a negative person when it comes to my medical concerns... I have a positive attitude about my MS and life in general, but I do reserve the right to be pissed off when I please.

That's the thing about MS... you never know what's going to happen. You can be doing fine for like a month and then one day, hello... pain and or numbness or both... with so many other possibilites.

So as of right now, I'm taking a "Tysabri Vacation" for the month of July, so I can continue to think about my decision... However, my decision at this point is to stop taking Tysabri and just wait for a medication to be approved by the FDA, which I'm really leaning towards BG-12!

That's all for now, will keep you posted as things change and or time passes by.

(stay cool, I know everyone is really experiencing some Texas Weather right now)

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