Before I continue with this post, has anyone else found it really hard to find information about Tysabri in Canada and Canadian patients stories who are on it or who have been on it, because I have. Hopefully I'll change that as you follow my story.
The MRI showed two new lesions on my brain compared to the last MRI of my head I had done two years ago.
I asked my doctor if he could tell by where the lesions are located what part of my body it might affect now, in the future, at some point in time. He said he could tell but didn't want to tell me because a) it might cause me stress knowing and since there's nothing I can do about it why put that stress out there and b) if he did tell me, I might think I have symptoms that I don't. Then he said, "I know the new lesions aren't affecting you now because you walked into my office". Now I get why he doesn't want to tell me the whole story. Even the little he told me was enough for my ears and enough to make me feel good about what is to come.
Before I walked into my doctor's office, and after a lot of research, I made the decision to try Tysabri. I did listen to his thoughts on Tysabri and Gilenya before making my 100% final decision, and I think he thinks I made a good decision based on what we know at this point in time about both medications. Honestly, I think if I had picked Gilenya he would have been just as happy with my decision and that I did finally make a decision to try something.
With Tysabri there is a risk of getting PML (Progressive Multifocal Leukoencephalopathy), an infection of the brain, and a higher risk of getting PML if you have the JC Virus antibody. As of now, or from what I understand so correct me if I'm wrong, the reports show 1.56 cases of PML out of every 1000 people who have been on Tysabri for over two years and are positive carriers of the JC Virus. You can get a blood test to see if you are a carrier of the JC Virus but it's not available in Canada and you can't pay out of pocket to have it done here in Canada (or so it seems). The issue of a patient getting PML is more of a worry after 24 infusions (or after two years as you get one infusion every four weeks) and my neurologist thinks by then (or before then) the test will (hopefully) be available in Canada. If I test positive for the JC Virus at the point when the test does come available, I can decide what to do then (switch to another medication or stay with Tysabri).
I have found the last two weeks so overwhelming with emotions. I feel both scared of what might happen and empowered by taking charge. I can't look back and say I didn't try.
So, for now I wait for the call to initiate the first infusion.
Bring it on!
The MRI showed two new lesions on my brain compared to the last MRI of my head I had done two years ago.
I asked my doctor if he could tell by where the lesions are located what part of my body it might affect now, in the future, at some point in time. He said he could tell but didn't want to tell me because a) it might cause me stress knowing and since there's nothing I can do about it why put that stress out there and b) if he did tell me, I might think I have symptoms that I don't. Then he said, "I know the new lesions aren't affecting you now because you walked into my office". Now I get why he doesn't want to tell me the whole story. Even the little he told me was enough for my ears and enough to make me feel good about what is to come.
Before I walked into my doctor's office, and after a lot of research, I made the decision to try Tysabri. I did listen to his thoughts on Tysabri and Gilenya before making my 100% final decision, and I think he thinks I made a good decision based on what we know at this point in time about both medications. Honestly, I think if I had picked Gilenya he would have been just as happy with my decision and that I did finally make a decision to try something.
With Tysabri there is a risk of getting PML (Progressive Multifocal Leukoencephalopathy), an infection of the brain, and a higher risk of getting PML if you have the JC Virus antibody. As of now, or from what I understand so correct me if I'm wrong, the reports show 1.56 cases of PML out of every 1000 people who have been on Tysabri for over two years and are positive carriers of the JC Virus. You can get a blood test to see if you are a carrier of the JC Virus but it's not available in Canada and you can't pay out of pocket to have it done here in Canada (or so it seems). The issue of a patient getting PML is more of a worry after 24 infusions (or after two years as you get one infusion every four weeks) and my neurologist thinks by then (or before then) the test will (hopefully) be available in Canada. If I test positive for the JC Virus at the point when the test does come available, I can decide what to do then (switch to another medication or stay with Tysabri).
I have found the last two weeks so overwhelming with emotions. I feel both scared of what might happen and empowered by taking charge. I can't look back and say I didn't try.
So, for now I wait for the call to initiate the first infusion.
Bring it on!
