until the unknown becomes known

05Apr16

Just when I think I’m so in touch with my body…

I had felt strong, with just the little bit of fatigue that I’d developed with MS (aside from the migraines and the nerve pain… but who knows the relation with that… I digress…)

So when my most recent MRI showed new disease activity, I was stunned… just onelesion in my pons (which is hardly anything for me, considering all of the lesions that I had already developed prior to diagnosis). And considering what I know about the pons — it’s a part of the brainstem which relays information between the brain and the spinal cord — symptoms may have been totally subtle. It didn’t make me feel suddenly more fatigued or uncoordinated… it’s just a new spot in my brain, that somehow showed up between a March 2014 MRI (my previous one) and my January 2016 MRI (my most recent one). Oddly, my current specialist told me that we should have an MRI “just in case” even though I hadn’t felt any new symptoms.

Within that nearly-two years, I changed medications three times (REbif side effects, Tecfidera was a nightmare, and insurance took forever to approve Gilenya) and had three major abdominal surgeries. Could it have happened then? Or… just some random cause? Who knows? I had quite a while off of meds, as well, during the changes.

In any case, I think this is a reason to go ahead with annual MRIs from now on — not that it would necessarily change anything.

And here I was, thinking that my disease was stable and hoping to get off of medication.

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One Response to “until the unknown becomes known”

  1. How discouraging. My last MRIs last year showed no change but I have clearly deteriorated. I did do a set last week as part of a research study and am seeing my doctor on Friday who has access to those.
    I say if you feel you are improving hold that thought. And what about the Swank diet, not the Wahl’s? Or CleanCuisine – Ivy Larsen?


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