These past several days have reminded me of those first months after finding out I had cancer. Month after month, test after test, I waited for results. I’d trudge to the mailbox, just praying that little postcard would be inside, the postcard that told me all my tests were negative. If I received a call or a phone message, I knew the news would be different. The waiting was agony. Now, 12 years after first being diagnosed with the “Big-C”, I still get that apprehensive feeling after my annual check-up and testing.
I felt that same apprehension in the days since my MRI, a ‘priority’ MRI scheduled at the end of last week to make sure I wasn’t suffering from PML or an exacerbation or from new lesions. I wrote earlier about the symptoms I had been experiencing over the holidays and my continuous worry of contracting the deadly brain infection from being on Tysabri as my treatment of choice. An MRI, blood work, and other testing were all necessary to try to get a handle on what was happening.
When the hospital faxed me my MRI report, the gals in my office were amazed by my response. Hugs were shared all around, big sighs of relief were released, and I shed a brief tear in the privacy of my own office. Then I called the hubby with the news:
· No PML was reported
· No new lesions were identified
· The existing lesions, albeit a bunch of them, were all stable – none were sparkling or shining bright
· And the best news of all – the large lesion on the Pons (at the stem of my brain) is missing. It’s gone. They didn’t see it at all! There was a note indicating that it should be monitored, which made me feel like it could come back, but on this particular report, it was nowhere to be seen.
So, what the heck was I experiencing if it wasn’t an exacerbation? Oh, I know: You have M.S. Sunshine! I suppose my exposed nerve endings could have been a little irritated by all of my life’s recent events.
But, this whole ‘missing’ lesion got me thinking. What happens when a lesion goes away? How does a lesion disappear? Does it break up like a kidney stone and work its way out of one’s body? Does it break free and float around inside one’s noggin and if so, how the heck does it leave the body? Or does it just break into little pieces and truly disappear? Perhaps my symptoms were a result of the lesion healing or breaking free? All great questions for my next conversation with my Neurologist.
Regardless, the MRI has told me one thing – I must be one of those lucky patients for whom Tysabri works – and works very, very well. Just eight months ago, before jumping on the Ty-Train, my MRI revealed several new lesions and sparkles all around – after 4+ months on Copaxone and just six months after my diagnosis and prior MRI. Now, eight months later, no new lesions, the old lesions are resting peacefully or disappearing from sight, and while my brain isn’t sparkling or shining, my hopes for the future are shining bright.
This definitely was an exasperating time period for me, however, I’ll take exasperation over an exacerbation any day!
CONGRATULATIONS!!!!! This is very exciting news, indeed!! I’m so happy for you, my friend. Definitely cause for even more celebration this saturday. Can’t wait to spend time catching up…it seems as if it has been forever since we’ve talked. Love ya!
Yay Kim!! Very cool news. And very interesting questions, too. I’ll be asking them when I go to the clinic soon.
I think I can tackle one of those questions, though. We know that there’s a heck of a lot going on chemically in our brains when there are lesions present. We just can’t quite properly measure what is in there and what it is doing. Last year, my neuro told me that this is the next step in neuro-imaging.
Anyway, with all those chemicals floating around from the lesions, it may be those things that are causing our symptoms, even once the lesions are gone.
When I began to get feeling back on the right side (the affected side) of my body, I attributed the tingling and pins and needles feeling to remyelination. Whether or not that’s the case, it works for me.
Celebrate!
S.
What a relief.
Excellent news.
Congrats.
What great news Kim!
I love hearing that a lesion ‘disappeared’
I learned several years ago at an Avonex conference that lesions can and do ‘burn out’ (awesome)
Congrats!
I’m so glad for you! I am a regular reader, and had my own exacerbation issues at the end of last year (which also required tests, and which also were reported to be fine) and I have been clicking back to see how you are doing — you’ve been in my thoughts! Happy (HAPPY) New Year!
Great news sis!
Hey, maybe you have a furry, black little angel on the other side pulling for you?
It’s about time I heard some good news. 2009 has gotten off to a rough start. I am so very happy for your news, Congrats!!! Here’s to many more years with “missing lesions”.