Pml – The World As I See It

I had an MRI the last Saturday in August and I just had my 6 month appointment with my doctor so I wanted to write a quick update. I am sure most people aren’t really interested in these updates but I want to be able to look back later and see what has changed and this is the easiest way to record how things are now.

Anyway let’s get on to how things are for me now. For the most part things are okay. I mean I don’t feel good hardly ever but I am starting to think that this is my new normal and because of that I am not going to really complain about it. I know things could be so much worse for me so I am trying to stay positive about everything.

My latest MRI showed that I am still stable and there are no signs that I am developing PML so I can still stay on the Tysabri. Which for me is a great thing because it is the only thing that has ever kept me stable so for me it does work and I don’t know what I would do if I had to stop taking it. I know that there are pills out now but they are still so knew that I don’t want to start on them until they have been out longer.

This is also the first appointment in years where we didn’t change any medications and we just are going to keep doing what we are doing and see what happens in the next few months. The only real change is the fact that my doctor wants to start seeing me every three months now instead of every 6 months which isn’t a huge problem just more time-consuming is all.

So all is all I am still stable and nothing much is really going on so I can’t really complain about things now. I have the MS Hug happen a few times in the past couple of weeks but it is hard to say that is what it is when it could also be my back injury so who knows about that.

If you have any questions or requests for something you would like to see please leave them in comments!

Well I think an update on the MS is long over due. For all of you that did read the post where told the results of my MRI I will post a quick recap to bring you all up to speed. When I went in to see the doctor a few weeks ago she told me that for the first time since I was diagnosed I was stable! It is a great feeling to know that I was finally on the drug that was helping me. So after she told me that she then told me I had to get over whatever my issue was with the new infusion center and go. I was and am still mad about it but I will do what they want me to do because this is the only thing that has worked for me. My next infusion is on the 2nd of April. I am hoping that all goes well with it because I have to go alone because of work and the fact that Grandma is going out of town that day.
I don’t think when I wrote my last that I really got into what the medication I am on does for MS and the bad condition it could cause. I am on a drug called Tysabri that is administered once a month by an infusion. An infusion is something similar to what they do when you are having chemo or getting a blood transfusion. Tysabri was released in 2004 after that it was take off of the market because a few people developed PML or Progressive multifocal leukoencephalopathy. This is a very rare viral brain condition that causes progressive inflammation of the white matter in the brain. From what I was told this virus lives in the kidneys of people but most people without compromised immune systems can keep it under control and it causes no problems. Tysabri works by attaching to the blood brain barrier and keeping the immune cells out of the brain. So because the immune system can’t get up into the brain PML can take over. There is currently no test to test for the virus. They released the medication back on the market in 2006 with strict warnings and stipulations. When I signed up to do this drug I had to sign a waiver saying that the FDA could look at my medical records at any point.
So far this is the only thing I have found to work. I know the risk of PML greatly increases after you have been on the drug for two years and I am about at that point. Today 31 0r 33 patients have gotten PML so that makes the odds about 2 in 1000 that you will get it. For me the benefits still out weigh the risks. That is a little bit about the drug that I am on let me know if you have any other questions about it!