Monday, 10 June 2013

No changes

Ironically, the day before my MRI results and check-up appointment with my Neurologist, I get a letter from Radiology with the findings from my last MRI.

Essentially:  No changes.

I know this can be interpreted as good:  As far as my brain goes (I didn't repeat the spinal cord MRI this time) things are the same.  Not worse.

But here's what I am feeling:  Nine months of injecting myself and two rounds of prednisone, and nothing is better?  I am the same as I was when I got this horrible diagnosis; my brain is exactly the same.  Every little lesion, dozens of them, including the big one in the left hemisphere, is still there, and measuring just the same.

I assume this means we continue along and see how the Copaxone does in the long term.  Then MRI again.  But, perhaps it means we switch to something else - we had talked about something with better stats at reducing relapses and preventing new lesions (Tysabri), or the newest oral medication just released in Canada (Tecfidera), which my extended health plan makes very difficult to obtain.

I've had 4 relapses in less than a year.  Before that, nothing for almost 4 years.  I want to know what's going on, why it's getting worse, yet why my MRI results are exactly the same.  Some lesions become permanent, and are always visible on brain MRI - so the same symptoms appear and reappear.   Perhaps that's what's happening?   Or, perhaps my relapses are more spinal cord related, and it's time to MRI that area again?

Once I meet with my Neurologist tomorrow, I'll know more.  I have a list of questions written out, and am planning on taking every last second of my appointment time.

Sure, I feel disappointed. 

I'll stare at my syringe tonight - with loathing - and wonder why I bother.  Why I go through this every single day.  Why I chose to start this very intrusive regime for the chance to improve my health, improve how I feel, improve my MRI findings.

And now I know it's done nothing to help. 

But, you know what... I still have to do it.  There is some part of me holding on to the idea that I just need more time. 

Just more time...


I am focusing on taking this news in stride.  I had an amazing day with my littlest boy and one of my most favourite friends in the world.  We drank coffee, ate muffins, chatted, and walked.  And it was perfect. 

This dear friend, Pam, is getting married in August, and sharing her happiness and joy really makes my heart smile.  I cherish each moment I get to spend with her.

She took Oliver to make his own button at The Regional Assembly of Text, on Main Street in Vancouver.  It was hilarious, yet oh so endearing, to watch.  I love these two:

1 comment:

  1. I am a weepy mess! Love you so much. Thank you for such a beautiful visit. xox