Does MS Ever Get Better?
Multiple sclerosis is such a mysterious disease. There is still so much that just doesn’t make sense. Reports from recent MRI scans has got me thinking.
My first MS symptoms
I’ve been officially living with MS for over 14 years now; arguably up to 20 years if you consider my first BIG bout of optic neuritis as undiagnosed MS. Or even longer if we want to look back to the vision issues that sent me through an MRI machine for the first time in 1994 or the depression diagnosed in college that very well could have been my first MS symptom.
It was September 2005 that a trip through the MRI machine showed that a couple of very small lesions in my neck had gotten bigger and added together with the one large lesion seen in July would finally give me the “multiple” part of multiple sclerosis necessary for an official diagnosis.
I couldn't see for three months
Back in March 2000 when I was blind in one eye, no lesions were found on MRI. Inflammation was evident on the optic nerve with no lesions. But boy, did that inflammation cause a bunch of ruckus. I couldn’t see for three months. Years later, evidence of nerve damage could be detected through visual evoked potential tests, although lesions were absent.
Sometime a few years into my MS diagnosis, the individual lesions in my neck seemed to grow into each other and become one very large lesion that spanned across three vertebrae covering the territory of C4 through C6.
Re-reading my MRI reports
When I re-read MRI reports over the years, I can see how the MS lesions in my neck have changed. Now the report simply states that “There is a faint intramedullary lesion involving the midline anterior aspect of the cord at the C5 vertebral body level.” No mention of that same lesion wrapping around the cord and down to C6.
Looking to an alternative treatment, Rituxan
Significant healing began to occur after I started using Rituxan 10 years ago. For this, I am truly thankful. My body functions better and I feel better than I did 10-12 years ago. At that time, my MS was on a downward spiral. I knew I needed to do something about it which is why I looked to alternative treatments (off-label, non-approved treatments) to stop my MS from getting worse.
I’m so glad that I spoke up and questioned my doctors back in 2009. Once we finally got into an every-6-month routine for Rituxan infusions, my MS began to get better. I got better. In fact, that last two relapses I’ve had are memorable since they occurred in November 2011 and February 2017.
My Rituxan experience: 2 relapses in 8 years
That’s it—two relapses in eight years. Amazing!!
So why the trip down memory lane?
Let’s go back to my recent MRI report. I was thinking about it and what struck me was that this time around the radiologist didn’t even mention that the lesion represented a persistent abnormality, T2/STIR hyperintensity, or evidence of demyelinating disease such as multiple sclerosis.
If I were to be going through the diagnosis process at this time with these MRI scans, I’d not likely get diagnosed with MS. I’d have to endure the evoked potential testing, lumbar puncture and spinal fluid analysis, and the wait-and-see-what-happens approach that I needed the first time around. But this time, I’m not sure that the evidence would earn me a concrete diagnosis.
MS doesn't just go away
We know that MS doesn’t just go away. It rarely gets better, besides partial remissions after an exacerbation. But when MS does get better, we should celebrate that.
The confusing part is that I STILL experience several MS symptoms. It doesn’t matter what lesions I have or don’t have. Some of my MS issues have never fully gone away.
I still experience MS symptoms
The pinprick test still doesn’t make me flinch due to numbness of all four limbs. Heat sensitivity makes it hard to walk, talk, and think straight, particularly when trying to do all three at the same time. Fatigue is a pain in the butt. My face sometimes feels like an elephant is standing on it and other times it feels like feathers are tickling it. Spasticity makes the back of my legs hurt like heck, for which I have three different prescription medications on hand to help reduce that pain. If I have a UTI, I know it because I can’t feel the simple act of peeing; no typical pain, just pressure in the abdomen and a smidge of incontinence.
Taking advantage of my healing
Despite all of this residual MS stuff, I’ve managed to take advantage of the healing. Without it, I don’t think that my husband and I would be cycling as much as we do. This past summer we did something I had previously thought outlandish or impossible.
We rode more than 51 miles on the first day of BikeMS!!
I felt so proud of myself because just 5 years ago, I could only ride an indoor exercise bike for 5 minutes before my legs were toast.
Celebrating stable disease
MS is certainly a mystery and it is often not static. But I gotta say that stable disease is the best static outcome we can hope for. Improvement is just the chocolate buttercream icing on the vanilla bean cake.
Thanks for reading!
Lisa
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