Tag Archives: PML

Wish that there was some kind of guarantee.

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. 😦

Leave a comment

Posted by on September 30, 2011 in Life with MS


Tags: , , , , , , ,

Worst Case Scenario

I knew everything that he was going to say before he said it. Well minus the medication he thinks that I should be on now. Yet somehow I am shocked. I feel like I was just diagnosed for the first time, all over again. Except this time I know exactly what that means. My mantra for the day is “pull it together, you are going to be ok”. My little bubble of them deciding that I was misdiagnosed and I’m really just fine was definitely popped last night. But let me write about the good things first.

The MS Care Center was very nice. It made me feel like I was actually seeing someone who knew what they were talking about. Actually it was more like a whole team of people who knew what they were talking about. It was wonderful. First there was a physical therapist, I think, it was late, I was tired and slightly delusional. He had me do a test that I have never done before. I had to put little pegs into a little board and then take them back out again. He timed me for this and apparently I did ok. The hardest part was that the pegs were in a bowl which made them hard to pick up and atleast a pot of coffee into the day my hands were shaking, but I did it in 22 seconds. He said anything around 20 was normal. Then there was the walking down the hall in a straight line. I’ve done that before. I managed to not bump into any walls. Then into the exam room where a nurse made sure that I didn’t have any numb areas and checked my blood pressure. All still good. Then the doc came in. He did the usual tests. Follow my finger with your eyes, and he hit my elbows and knees with that stupid hammer, and the strength tests. Still good.  Apparently my biggest problem was that I opened my mouth. Oh and my MRI wasn’t good either.

He said that everything that I have been experiencing, plus my last MRI prove to him that the copaxone isn’t working for me. So now I need to go for another MRI, good bye $300. He is trying, and I think he’s winning, to talk me into switching to Tysabri. My biggest problem with Tysabri is that the side effect is death. No joke. Death! Well to be more specific a brain infection called PML. So I am taking a blood test on Friday to see if I already have PML, since it already exists silently in some people. However, even if I don’t have it there is the possibility that I could contract it.  UHG! The reason I am considering it is that it’s success rate for “quieting” MS is really good. Of course it’s only been out for 2 years but all MS treatments pretty much just came out, except copaxone. Like a lost love, that’s how I feel about it now. Copaxone has been around for roughly 16 years now and if it works is wonderful. Damn it! Why did I have to be one of the people it didn’t work for?

I really, really am trying to see the silver lining here. Maybe it’s that I won’t have to give myself shots anymore. Tysabri is an infusion that you get once a month and is given by a professional. No at home, the husband has to do it, infusions like the steroids were. So I guess that’s good.

Now I just have to have my MRI, pray that there aren’t new lesions, and take my blood test. End result, new drug by Christmas.


Posted by on September 28, 2011 in Life with MS


Tags: , , , , , , ,