Disclaimer: I will be fine. I just need to be dramatic about it first.
This morning my neurologist called with the results of my recent MRI to drop this bombshell: “There is a large new intramedullary lesion within the left lateral medulla.”
Okay, fine. Nobody talks like that.
What she actually said was that I have a new lesion on the part of my brain that affects speech and swallowing. The quote above is from my MRI report. Add intramedullary to the list of words I wish I didn’t know. (I was not good at biology, obvi.)
Over the past few months I’ve had the alarming experience of losing my voice, struggling to speak, and occasionally gagging on water. I suspected this was MS, but for some reason (fucking brain damage or good old denial?), I didn’t actually realize I was having an attack. I’ve been in the MS game for 19 years now, but it’s been a minute since I’ve had a real relapse. My shiny new intramedullary lesion (am I saying that right?) was scientific confirmation that the beast is waking up, and the news landed like a gut-punch.
Instead of taking this in stride, I burst into tears, like a rookie. New lesions aren’t supposed to happen to me. I had Lemtrada! What gives? Am I letting the stress of Covid get to me? Am I eating too much Miss Vickies? Not getting enough sleep? Drinking too much? Hanging out with the wrong crowd? I swear to God I’m flossing. Wait. Is this because of all the swearing?
My tears this morning weren’t just tears of grief or frustration. My tears today were white hot tears of rage. In the years between my last Lemtrada infusion (2016) and now, I had been dismissed as having unmodifiable disease with no option for treatment despite worsening symptoms. Go home and hope for the best, but like, plan for the worst, cause this shit isn’t getting any better. I was effectively getting dumped by my doc.
I will not be Pete Davidsoned. And I will not throw my hands up in defeat. It was not easy or fast, but I finally found a new neuro who was not willing to give up on me and who believes Ocrevus is my best option. But months of insurance delays and Covid-caution postponed my access to treatment even longer. Knowing that if only I had been on this drug six months earlier I might have never needed to think about my medulla and how it might try to take my voice and choke me out is a frustration that is difficult to articulate. Like, I really need to speak to a manager. I demand a refund and a lifetime supply of whatever it is you sell, because:
Work will begin with a speech pathologist to protect and rehabilitate my speaking voice. I will spend my precious energy learning things like safe swallowing techniques and I don’t even know what the fuck else. It’s hard to feel like you’re enriching your life when you have to spend so much of it just trying to catch up; chasing the simple abilities you once took for granted.
All this to say, be a squeaky wheel. MS is not like many other diseases that have obvious consensus-based treatment plans. No two cases are alike, and doctors have vastly different opinions on how to treat the disease, despite the fact that research tells us early and effective intervention is key. If only I’d had treatment x a little earlier is a heart-breaking path I’ve been on all too often. If you feel like your doctor is willing to gamble with your future, find a new doctor. It’s not good enough to react to MS. We must prevent attacks from happening at all.
End rant. Thanks for listening, Trippers.