Happy to be Unremarkable
Unchanged, grossly normal, unremarkable ----- These are some of my favorite words that were included in my most recent MRI report. Very good news. It confirms that my MS has remained stable for another year.
I have been very fortunate. In fact I haven’t had a BIG, steroids-required, symptoms-out-of-control relapse in four years. When I think back to the last one I realize what a difference four years and a minor change in treatment philosophy makes.
Back in 2011, I had a lot of health issues going on and I was suffering from ‘doctor fatigue’ - that feeling you’ve had too many doctor’s appointments and you’re tired of making ‘medical care’ your full-time job and not enough time to take care of yourself.
When I blogged about ‘doctor fatigue’ in 2011, these were some of the things I talked about: 1) failing to schedule an appointment with my rheumatologist in the summer, 2) skipping routine blood monitoring, and 3) not calling the office when I experienced flares. When I finally did schedule an appointment, it was to schedule Rituxan infusions.
At the time, we were waiting to schedule infusions until AFTER I began to experience the return of symptoms (of MS or RA) and I was trying to tough it out. That November, I experienced an MS relapse that affected my walking ability with increased weakness and numbness in my limbs and severe fatigue. A round of solumedrol reduced both my MS and RA symptoms. It was at this point my doctors and I decided that I should try to schedule Rituxan infusions BEFORE symptoms began to return or relapses or flares occurred.
Fast forward to this fall at the end of a very busy string of medical visits and I get good news that reinforces our decision to continue Rituxan infusions every 6 months was the right choice. Rituxan (rituximab) is a B-cell depleting therapy that is used for a variety of conditions including lymphoma and rheumatoid arthritis. Recent trials with a drug that works in the same way, ocrelizumab, showed effectiveness against MS.
My good news follows a recent trip through the MRI machine to take a peak under the hood so to speak. The procedure itself has become so routine that it’s no big deal any longer. But I do get excited looking at the images and reading the radiology report. I like to plug the CD disc into the computer almost immediately after I get home. It’s a strange sort of fun. The MRI report was even better. Here are excerpts:
“Cervical spine: There are abnormal cord lesions of the cervical cord, which are stable since prior examination. These lesions are at left C5 level, with additional lesion of the left posterior C6 level, and are unchanged. There is no evidence of new lesion, swelling, or abnormal enhancement.
Brain: The brain appear unremarkable, and no evidence of demyelinating plaque. These findings appear unchanged since prior examination. There is no mass hemorrhage or extra-axial fluid collection. The ventricles and the basal cisterns are normal without mass effect. The intracranial vessels are grossly normal.”
Since my doctors and I moved to a more regular routine with the infusions, my MS has been stable. I haven’t had a major relapse since that one in November 2011. My lesions have stayed the same, or shrunk in some instances, and my disability status has improved. As a bonus, any RA flares I’ve had have been very minor and I’m currently in remission.
Stable. Unchanged. Unremarkable. These words become truly remarkable when you live with MS.
How many specialists did you see before finding "The One"?