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Wish that there was some kind of guarantee.

30 Sep

I went for my blood test today. They took more than I thought that they would but I got some more information. I got to see the infusion room. That was nice. Not as nice as I was expecting, but still nice. Big comfy leather lounge chairs, everyone gets their own flat screen, I can live with that. Especially since you would be sitting there for 2 hours. I didn’t notice any coffee machines though. That might be a deal breaker. 🙂 I have to wait 4 weeks for my results. They said that they would call me when they come in. I think that I am more nervous about those results than I was about finding out that I have MS. Of course that didn’t take 4 weeks. So instead of waiting for the results to come in I am trying to figure out what I would do either way. I have decided that if it comes back negative I will definitely start going on the Tysabri immediately. If it comes back positively though I don’t know what to do. My doc feels that I should go on Tysabri anyway. I am reading very mixed things online about this. I read that one of the things that the blood test tests for is your CD4 levels. I still have to do more research on what that even is, but what they said was that if your CD4 levels go below 500 then they kick you off of the Tysabri. Apparently if you go below 400 you are now pretty much on the cusp of getting PML. But like I said I still have to do more research. . While I was there they told me that they test your blood every time that you come in for an infusion. I’m not sure if it’s because I joined a study having to do with the blood tests or if it is just a precaution that the office does. I asked what happens if the blood test does come back positive. They said that they will just monitor me more closely. What exactly does that mean? I don’t know.

I think that it is very frustrating that my choices for medication right now are the two things that when I was originally picking out a medication I said Yeah right who would take those.

The other choice that I am considering, should I be in trouble of getting PML, is Gilenya. Which is a pill. That may be it’s only redeeming value. It also does not have great side effects. To the point where they are considering pulling it as an option in the US. I don’t even think that it has been out for a year and it is causing serious heart problems. I believe that it was said that right now the dangers of the side effects are not necessarily on a good enough balance with the positive results of slowing down the progression of MS. But again I need to do lots of research.

So this weekend will be;

All the house work I didn’t get to do during the week

Plus about 20 loads of wash that have piled up

And research, lots of research!

This is what happens when I have a busy week and as of recently (due to the November elections) an absentee husband. 😦

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Posted by on September 30, 2011 in Life with MS

 

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