Changing course

The state of denial has one less resident: me. It only took me seven years to wake up.

So I mentioned recently that I had changed my mind regarding more aggressive treatment for my MS and I thought I’d explain that a bit more.

I’m usually pretty relentlessly optimistic regarding my MS, some might say to the point of being naive. After all, I feel like a lot of other people with MS have it much worse than I do. And now that my husband has cancer, my MS seems like such a non-issue to me in comparison.

But then I started turning my research mode to my own case of MS, looking at what my MRIs really say, and then comparing one drug to another. Let’s just say that I gave myself the wake-up call I’ve been needing and I now understand why multiple neurologists have been pushing Ocrevus on me so hard.

The very first neurologist I saw back in Michigan said my MRI looked like I was already progressive at the time of my diagnosis in 2013. Of course, Ocrevus wasn’t out then but other drugs were. She actually said primary progressive (PPMS) but I was very dismissive of that. To be honest, I still doubt I’m PPMS even though I fit the diagnostic criteria, because my lesions are all in my brain and I have none in my spinal cord. PPMS usually has more lesions in the spine than the brain.

I thought she was crazy so I went to another neurologist. The next neurologist contributed to my denial because she was convinced I had something other than MS and ran a ton of tests looking for other causes. Even my current neurologist initially thought I had a rare genetic disease called CADASIL which was actually a radiologist’s impression of my MRI.

When I was in the hospital with my last relapse in 2017, the neurologist on staff said he consulted with the head of neurology at UT Southwestern (which is in my area) about my case. He strongly recommended Ocrevus, but I brushed that off as insignificant. I figured the doctor at UTSW was only recommending Ocrevus because of how much money he got from the drug company. He got over a million dollars, per public records…but he was also part of conducting the research study for Ocrevus to get approved. (So maybe he was actually getting paid for his role in developing a blockbuster drug and not collecting cash incentives for prescribing it.)

It seriously never occurred to me that if the staff neurologist was consulting with the top MS specialist in our area of 7 million people about me that maybe my case was significantly out of the norm. I was arrogant enough to think he was just overreacting to a bad-looking MRI that had no correlation to my functioning. Obviously, I was totally fine since I could still walk, right?

So I’ve been dismissing neurologists’ opinions since day one, I guess because I was in such deep denial that I was as bad as they said I was. I thought they were just trying to scare me so they could push drugs on me. After all, I can still walk mostly fine and I rarely have relapses. (Even though not having frequent relapses can itself actually be a sign of being progressive, rather than a sign of milder illness like I was viewing it. I was probably secondary progressive from my first MRI because it took me at least 12 years to get diagnosed.)

But then I looked at my MRI results again from a more objective mindset. They say I have extensive signal abnormalities in both hemispheres of my brain and involvement of the pons. In plain English, that explains why my biggest symptoms are cognitive and problems with coordination.

I also have a ton of “black holes” in my brain, which are old lesions that have essentially turned into dead zones. My brain tries to compensate for them and re-route to new pathways but it’s running out of parts of my brain that aren’t damaged.

Oh. So that’s why they want me on Ocrevus. It really doesn’t matter that my mobility is still good. I’m probably not likely to ever end up in a wheelchair. What’s actually more likely is that I’ll start losing even more brain functions. And I’ve already lost a lot — cognitive problems are the basis of why I got approved for disability.

What good is it to maintain the physical ability to drive if I can’t remember which pedal does what or what the stoplights mean? What good is it to be able to cook for myself if I forget that stoves need to be turned off or how to use a fire extinguisher?

I’m actually at risk of my worst fear: becoming too dumb to function. That sounds crass and I don’t mean for it to. But I’ve always been so proud (too proud) of being smart and I really could lose even more than I already have.

So when Ocrevus reduces brain volume loss by more than twice the amount than the Rebif I’m currently taking does, that’s probably a good reason I should try it.

How have my neurologists not tried to throttle me? I’ve been so anti-meds, so convinced that I was just fine without them and would stay that way. There’s actually a lot of evidence for the opposite. There’s no way even a drug that scares me a lot (which Ocrevus does) is scarier than what I’m up against. How could I even think diet could be enough when I have so much brain damage?

So that’s why I decided to change course. Once I really grasped how much is at stake, I can’t stay in denial anymore. And I also really hope the remyelinating drugs that are currently in trials will really work. I’m also looking at a lot of other neuroprotective things that I can do in addition to disease modifying drugs. I just can’t lose any more of my brain.

1 Comment

  1. Aimee Straw says:

    I’ve been in denial the past few years as well. Thanks for sharing! Starting Ocrevus soon as long as everything goes through ok with my insurance. I’m scared, too. Fingers crossed, though. Here we go.


Leave a Comment

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s