Chug-a, Chug-a

Toot! Toot!  All Aboard.   It’s time to jump on the Ty-Train.  And here begins Sunshine’s journey with Tysabri – the drug we’re hoping and praying begins to alleviate the relapsing part of my Relapsing-Remitting M.S., decreases potential disability, and hopefully protects my noggin from future attack across that all important blood-brain barrier.

It’s quite a process, getting started on the Ty Train.  I began that process yesterday and will continue to chronicle my journey each and every month.  I selected Tysabri after weeks of research and discussion and debate.  My heart is swelling with great hope; the hope that my body will accept the treatment without allergic reaction and the greater hope that I will fare similarly to those patients who sing Tysabri’s praises. The hubby and I truly believe it’s the best, current option for me – for my situation, my diagnosis and prognosis, my lifestyle and my dreams for my future. 

I started the process with a required visit to my Neuro’s office yesterday.  That’s phase one of Tysabri’s Touch Protocol - -a thorough screening process designed to ensure only the proper patients are selected for this form of treatment. There is a very, very, very small chance that those on Tysabri could end up with PML - -a rare, but deadly, brain infection.  It’s all related to having a severely compromised immune system; those with such systems could be susceptible to PML, so the Touch System works to identify risky patients and disallow their participation with Tysabri. With more than 22,000 patients currently being treated with Tysabri (with the hopes of 100,000 patients on the drug in the next two years), not one patient has suffered from PML in the last two years.  It would be irresponsible for me to just sweep the PML issue under the carpet.  It’s out there, but it’s truly a minimal risk.  Yes, I’ve been told it’s more likely for me to get run over by a bus this afternoon then it is for me to suffer from PML. 

I also need to partake in yet more blood work, designed to provide a baseline measurement for check-ups and to rule out a few things – and to monitor against liver disease while under treatment.  Next week I have my newest MRI – we’re extending the range down to my T-spine this time around (in addition to my C-spine and brain from the previous scan).   I’ll know shortly if any new lesions have appeared since November, 2007.  We’re guessing it’s likely, due to a new symptom or two that have appeared recently and also the location of the symptoms.  I like that I’m having a new scan. It’ll truly help me personally measure the impact of Tysabri, right from the very beginning.  And, shortly, I’ll secure the date and time of my first infusion.  Then I’ll begin counting the days.  I truly can’t wait.

Last weekend I was Jonesing for a good, healthy cry.  This week, I’m just Jonesing for several, consecutive strong and healthy days – a series of small wins even. You know what I’m talking about.  One of those days where I just sit in my office chair and think, “Damn, I feel good this week!”  I might throw a party the minute I hit a solid week of feeling what has become the “new normal” again.  Let’s hope the Ty Train follows the map to my destination. 

Coming soon…the Secrets of the Ty-Ty Sisterhood…