There are two things I didn't mention about my recent neurologist visit.
First, he told me there is some upstart new MS drug that is very similar to my current drug, but with fewer side effects. Namely: if you find yourself with an urgent need for a fully-functioning immune system, you'd be better off with this new drug.
I find myself irrationally loyal to my drug, since I was in the clinical trial. (If you use Gilenya, look at the side effects and find "Weight gain." I put that there.) I told the doctor I would stick to my current drug, thank you, given that it is still working so well for me.
That leads to the second thing, which happened when he pulled up my MRI. I was prepared for The Counting of the Lesions, which you know delights me, especially since I seem to have fewer lesions now. Seven years ago it was fifty, last time it was 35 or so.
This time, he did a side-by-side comparison of my two most recent MRIs, the better to show how my disease has not progressed. In the midst of pointing out that I had no new lesions, he said, "And you have this shadow on your cerebellum, but you had that last year too. See here?" And I saw that oh, a third of my left cerebellum was paler than the rest, on both MRIs.
"Oh, I see," I said. I nodded.
About eight hours later I said, "Wait. What now?"
Perhaps it took me eight hours to react because it took that long to remember that the cerebellum is a vital part of my brain (and I remember that from junior high because it almost has "Ellen" in its name). Not as vital as my brain stem, which still looks pretty good. Perhaps I was unperturbed because the shadow was there for two MRIs and the person who typed up the MRI report didn't comment on it either time. Or maybe I don't know what a brain shadow is. I'd be concerned if I had a big fat lesion taking up a third of my left cerebellum. A shadow? Who knows what that is. It's odd they call it a shadow, since it's paler, but I suppose MRIs are like a photographic negative.
After a few minutes of mulling if I should be upset about this news I ran it past Gary, and as soon as he said, "WHAT DO YOU MEAN YOU HAVE A BRAIN SHADOW" I realized why I wasn't more concerned. If I had a normal brain I'd be dismayed, but I've got what amounts to a brain full of 30 plus pimples and I've been told I have a rash. More of the same.
So I'm cool now, I just have a little shade on my lizard brain. I am at the point that I keep singing, "I'm being followed by a brain shadow, brain shadow brain shadow. Leaping and hopping on a brain shadow."
Perspective is... different... when you are just sort of accustomed to things being awry. (that said: maybe ask about the shadow next time?)
(and congratulations on fewer lesions!!! I had heard that you could stop the growth of them but not reverse them, but apparently this is not the case!!! Hooray for more things being healable than we thought!)
Posted by: KC | April 12, 2019 at 04:47 PM
KC - I always thought they couldn’t be reversed as well. So then I did a search! And found this really crappy bit of news! Fewer lesions mean your brain is liquefying. Bad! Totally talking to the doctor now.
https://multiplesclerosisnewstoday.com/2018/06/07/atrophy-brain-lesions-predicts-disability-ms-study-finds/
I suppose it’s possible that his standard for what qualifies as a lesion has changed in the past seven years.
Posted by: TheQueen | April 12, 2019 at 08:30 PM
KC and all concerned - well, that was a ten-minute long freakout. There were only 200 people in that study. Never mind.
Posted by: TheQueen | April 12, 2019 at 08:42 PM
Quite frankly, if your function is staying approximately stable, and you are Learning New Things and Doing Stuff, I do not think you need to worry that your brain is liquefying. (but: would still talk with neurologist, probably, both re: shadow and re: number of lesions)(sorry about the freakout - those are not fun.)
Posted by: KC | April 12, 2019 at 09:25 PM
KC - Amen to that. I haven’t yet seen a correlation before between what my MRI looks like and how I feel, anyway.
Posted by: theQueen | April 12, 2019 at 10:30 PM