Tuesday, July 9, 2013

Tysabri, You Little Champ!

Last week I had my six monthly MRI.  No biggie... my time in the machine wasn't long enough.  I had just fallen asleep when all the scanning finished and they pulled me out of the tube.  I've gotten very good at falling asleep in the machine, even with all the loud noise.

Today I had my neurologist appointment to go over what the scan had discovered about my brain. (That it is non-existent!)  Consciously I hadn't given the outcome much thought.  But subconsciously I think my body did.  I started to notice that my right leg felt a bit funny.  I mentioned it to my husband and he said, you said the same thing before your appointment last time!!  Then I pondered whether this meant the Tysabri was no longer doing its job or whether my head was playing tricks on me for a bit of drama and anxiety.  In the end, I told myself that I would know soon enough and it wasn't worth worrying about just yet.

The other thing that I did differently this time, is that I did not pre-empt what the neuro had to say.  I didn't go and pick up my report early.  I was meant to go and pick it up on Friday, but I forgot.  I could have picked it up yesterday (Monday) but I thought since my appointment was 24 hours away I could live without knowing the results.  Therefore I went into my appointment not knowing what the report said.  The down side of doing this was I paid $180 for about 10 minutes with my neuro, not asking about what I had read in my scan report.  FYI I did get $150 back from private health insurance.

So what did the neuro say?  ALL CLEAR.  No lesions, no activity - nothing new to report!!!

This is what the comment section of the report had to say: No significant interval change since 7 December 2012, with no features of PML identified.

PML you ask?  Progressive Multifocal Leukoencephalopathy - Tysabri increases your chance of getting PML, a brain infection that usually causes death or severe disability.  I think I may have written about PML previously.  PML starts out as JC virus (John Cunningham Virus).  I don't have the JC virus, but the JC Virus Test is not 100% accurate.  A "false negative" result occurs when the test indicates that the JC Virus is not present in your body, when it actually is.  This has occurred in a small number of people who have taken the JC Virus Test.  And this is why they look for signs of PML, which has symptomology similar to MS, in an MRI.

What does this mean for me now?  I continue on my once monthly infusion of Tysabri - it's a lovely three hour break anyway.  I don't need another MRI for 12 months, but I do need to see my neuro in six months.  I can live with that.

Woo Hoo!!!

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