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So infusion number two was an even easier experience than the first. I killed a couple of birds with one stone, got some reading done for school while I sat in the chair. I found out I did test positive for the JC antibody, but I’m not sweatin’ it.  

Here’s a list of awesome things I’ve noticed, or better yet haven’t noticed since going on Tysabri:  

Muscle spasms-Waaaaaay less frequent, I can’t emphasize this enough

Weakness in my neck-Yeah, it sounds stupid. Sometimes though it would feel like my head was bobbing around like Annette Funicello on Entertainment Tonight circa 1995. This was unpleasant, but is has pleasantly decreased. 

Energy levels-Way higher. I’ve been joining Jackie in the fight against fat. I can now walk more than five minutes (try 45 minutes, bam!) on the treadmill without losing any sensation in my legs or feet.This hasn’t happened in ages! This is huge for me. 



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Comments

leon link
01/19/2011 04:02

Did you ask for a specific flavor? LOL

I used to ask for Orange (but never got it)

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Dana
01/19/2011 21:22

Leon!

I did not, but now I know next time to ask for watermelon. I'm sure they'll totally accommodate me!

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dana
02/15/2011 18:01

i hate you

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Caroline
03/06/2011 09:39

I am so glad that the Tysabri is already making a difference! I have been on it for about 2 1/2 years and am so glad I chose this treatment! :) Hope you continue to have less symptoms!

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Taz link
03/13/2011 10:32

Stupid question but how can I add a photo in my blog ? cheers

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ionebeck link
03/13/2011 12:47

your beautifull

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Laura Novak link
03/13/2011 14:00

I just found your website through the Weebly feature. it is excellent. Very much a blog site more than anything and so easy to navigate and read. Your writing is excellent too. Thank you for sharing your stories. And tell me if you can, if you designed this all yourself or did Weebly help you? Best wishes, Laura

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Paula link
03/13/2011 20:51

This blog is so informative, thank you for sharing this. You are a great writer! Take care : )

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Karin H
03/17/2011 14:41

I have a question for you:

You said that it turned out that you were positive for the JC antibody after all - had they told you that you tested negative?

Okay, 2 questions - How did they suddenly just happen to find out you were positive??


I just made the appt for infusion #3 - My neuro told me that I tested negative for JC, but that I couldn't see the actual test results. That almost made me walk away right then & there.

I've had a feeling that this whole TOUCH thing is just another trial, where they tell us we're negative to get us to start on Tysabri, and then use us to test their hypothesis about antibodies to JC determining whether PML develops.

If they suddenly start "discovering" that most Tysabri patients are actually positive for JC antibodies, this is gonna feel like a giant sting operation.

And if I'm one of the ones they "discover", I'm outta here. Maybe I'm a tinfoil paranoid, but I wouldn't put sneaky stuff like that past a giant pharmaceutical company.
:/

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Dana link
04/21/2011 12:13

Karin,

Sorry our site is being a little funky, and won't let me reply to specific comments...not to mention I've been lame about checking in here!

The answer to your first question is "NO." I was never told that I was negative for the JC antibody, I was just waiting on my results. They didn't suddenly find out I was positive, as I was never told one way or another until my results came in.

I didn't ask to physically see my results, but since they were positive, I wasn't really going to contest the validity. If your doctor is unwilling to provide you with documented results, then that might be a cause for concern.

In terms of the TOUCH program, it's intended for the safety of those on Tysabri, however I'm sure will be invariably (and for good cause) be used to document and thus provide factual information for the continued research into the drug and the obvious risks.

I want to make clear that you understand the fact that the majority of the population will test positive for the JC virus. If you happened to test negative, you are fortunate. This is an antibody that the majority of the population has at some point in their life been exposed to.

As far as I'm currently aware of, there is no definitive evidence that suggests that JC is the only marker or possible determinant of developing PML. Research is currently being conducted, and if you've been tested as I have, your data is most likely included in large scale studies including all those taking Tysabri, and their positive or negative testing for JC.

I don't think you're paranoid, I think your working on making yourself aware. There is a real risk with Tysabri, as there are with many medications. And yes, it's often times a crapshoot. Think about the benefits versus the risks, and what that means to you. It's all going to be relative, and we're all going to have different feelings. I don't fault anyone who foregoes using something like Tysabri.

I do suggest you get in and do some more research, look at the most recent stats Biogen has put out. Read up on PML and JC. The best thing we can do for ourselves is to be educated about the choices we're making, and not draw conclusions before we've got all the facts (the ones we've been provided anyway).

Good luck to you on your journey!

Dana

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