I got the call a couple days ago that I do NOT have the JC virus. This means that I can start on the Tysabri infusion treatment. I got the paperwork/release form to sign in the mail today. Everything is signed, I just need to drop it off at my neurologists office on Monday and I will hopefully start treatment within a month or two.
All this means is that hopefully my MS will be stopped in its tracks. I should (according to my dr) have no more flare ups. This does not mean everything disappears, I will still have the silent symptoms to deal with, but I'm becoming quite a pro at dealing with those.
All in all, really good news for me. I am very grateful......
Showing posts with label Tysabri. Show all posts
Showing posts with label Tysabri. Show all posts
Saturday, September 22, 2012
Thursday, September 6, 2012
I strongly dislike waiting
I have never been the most patient person. Those of you who know me will not be shocked by this declaration. I went to the doctors today for a blood draw. This does not bother me as I've never been bothered with needles.(unless I'm doing the sticking! Backwards I know)
The reason for the blood draw is because at my neurologist office last Friday I was told my MS, while not super active, is active enough that he wants me on treatment again. The best option would be a drug called Tysabri. This is a once a month infusion. So why not just start it? Well, I have to be tested for the JC virus. This is usually a harmless virus which "hangs out" in the body (my dr said around the kidneys) and doesn't do anything. About 50% of all Americans have the JC virus. The issue is that a small amount of people who have the JC virus and go on Tysabri have a problem. The problem is that Tysabri can potentially activate the virus, sending it to the brain and causing life threatening problems including death. So, now I have to wait 10 days for the results. If I do not have the virus, I will start the treatment and consider the 1&1/2 hours at the infusion center as "me time" every month. If I do have the virus then I will need to go in and talk with my neurologist again and try to weigh the pros and cons of taking the medication. So this is my waiting game for the moment and I'm not very patient. Ten days will fly by right? Besides, do I really want the results? Yes, one way or another, I need to get those results and make a decision which could alter the course of my MS and health for the rest of my life. Waiting.....waiting......waiting.....
The reason for the blood draw is because at my neurologist office last Friday I was told my MS, while not super active, is active enough that he wants me on treatment again. The best option would be a drug called Tysabri. This is a once a month infusion. So why not just start it? Well, I have to be tested for the JC virus. This is usually a harmless virus which "hangs out" in the body (my dr said around the kidneys) and doesn't do anything. About 50% of all Americans have the JC virus. The issue is that a small amount of people who have the JC virus and go on Tysabri have a problem. The problem is that Tysabri can potentially activate the virus, sending it to the brain and causing life threatening problems including death. So, now I have to wait 10 days for the results. If I do not have the virus, I will start the treatment and consider the 1&1/2 hours at the infusion center as "me time" every month. If I do have the virus then I will need to go in and talk with my neurologist again and try to weigh the pros and cons of taking the medication. So this is my waiting game for the moment and I'm not very patient. Ten days will fly by right? Besides, do I really want the results? Yes, one way or another, I need to get those results and make a decision which could alter the course of my MS and health for the rest of my life. Waiting.....waiting......waiting.....
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