Something to Hope For, Not to Dread
[ad_1]
“Burned-out MS,” according to the MS Association of America, is a “type of inactive MS; it is a controversial term used to describe MS patients whose MS progression slows dramatically later in life.”
It’s a term I’ve heard used to describe a later time in the life of a person with multiple sclerosis.
I was a little surprised to hear the term (well, a version of it) at my most recent appointment with my MS-specializing neurologist. Not that my MS has burned out yet. Quite the contrary, but more on that in a moment.
Could MS Burnout Be a Positive Effect of Aging?
We were discussing my lesion load, my clinically observable physical progression, and some of the invisible symptoms that have advanced in the few years since we last met for a full examination after an MRI scan.
While concerned about all that, my neurologist mentioned that he’d hope for my MS to burn out in the coming decade or so.
It’s odd to think of the possible positive effect of aging on MS, when one of the things I understand well is that I am living inside a body that acts a couple of decades older than it is. That I might sit and wait for my age cohort to catch up to my symptoms doesn’t sound too bad, but we know that’s not how this all works.
For Now, I’m Still Progressing
The progression part of our discussion came from the MRI evidence that I have more new lesions since the last T-3 scan than one could count on both hands. Now, it’s been a good few years since I’ve been in the tube, so if we average the new scars over those years, it mightn’t be too bad. If, however, there has been a flurry of activity recently — which would coincide with a recent spate of new symptoms — then it isn’t too good, either.
We’ve set out a plan to have me revisit the noisy MRI chamber in another year or two and see what the new results look like. In the meantime, I’ll keep a closer eye on the progression of old stuff and look out for new niggly bits that seem to be coming along at an increased pace over the past little while.
MS: A Disease of Ambiguities and Unknowns
Funny, as I read back over the previous paragraph, I am struck by the ambiguities to which I have become accustomed over the past decades of living with an incurable, progressive, unpredictable disease. It seems that I have settled into my MS détente, but I have to wonder if I’m not slipping back into a cold war with the disease.
So my MS has gotten worse. No big surprise. How much and how fast we don’t really know. How bad it gets and how far it will go, that’s one that no one can predict.
And now I’m on the outer edge of that space where we talk about MS slowing down its destruction. It’s an odd place, this later middle-age with a degenerative disease. But it’s the place I am at, and I suspect that a few of you are realizing that ye’re here with me, too.
Wishing you and your family the best of health.
Cheers,
Trevis
My new book, Living Well With Multiple Sclerosis, is now available. Follow me on the Life With MS Facebook page, and read more on Life With Multiple Sclerosis.
[ad_2]
