Different highs, different lows | Monthly Resilience Report: November 2020

highs and lows
Backyard views during some downtime in Canada.

This post is part of my Monthly Resilience Report series, in which I document the ebbs and flows of recovering from autoimmune encephalitis. Previous ones can be found below:

How did this month go?

Good news! Bad news! Good news!

…and repeat!

Every week brought some different health surprises, the details of which matter much less than how I’m closing out this month (more on that later). Let’s just say that when there are multiple professionals on your healthcare team, the strain in coordinating communications and getting them on the same page becomes bloated.

I thought November would feel a bit lighter than last month, given the major medical chores I had gotten through. Notably, I had gotten a second opinion that put my mind at ease—at the time. This led me to believe I’d be able to take my foot off the gas pedal and coast through November, leaving me to focus on self-care and my weekly counselling and speech therapy sessions.

However, early on in the month I had some unsettling days of depersonalization and derealization. I felt super off and didn’t like where things were headed. My gut feeling told me that Rituximab alone isn’t cutting it at all anymore, so it was back to the drawing board yet again.

I elaborate on the frustrations of being a chronic seronegative autoimmune encephalitis (AE) patient in my latest post, The Real-World Challenges of Surviving An Autoimmune Encephalitis Diagnosis. If you’ve dealt with a relapse, a lacklustre response to medications, or dismissive doctors, go check it out.

What did I do?

Found a New and Improved “Second Opinion”

Thank GOODNESS for patient support groups, the AE Alliance and International Autoimmune Encephalitis Society being the two that I’ve gotten the most out of. Really, any forum that’s allowed me to connect with other AE patients has been a blessing—I would not have made it to a diagnosis let alone ongoing treatment without the leads I’ve gotten from others who are personally affected by this dreadful illness.

I say “second” opinion with quotation marks because this is actually the 12th neurologist I’ve spoken to; fourth with any notable experience with AE, specifically. Lol. To those receiving subpar care for their AE currently, please note that there’s no shame in seeking another opinion or switching doctors (if the option is available)!

Don’t fall victim to the sunk cost fallacy. Your life literally depends on it. There’s HUGE variability in the opinions you’ll receive from doctors, and it pays to find someone whose approach you feel comfortable with.

It’s too early to say how things will shake out, but I had an excellent first appointment with this new doctor. I like that she has close connection with Dr. Souhel Najjar of Brain on Fire fame, and that she independently arrived at a conclusion that I had already walked into the appointment with. It left me feeling super hopeful, to say the least.

Based on my specific clinical picture, her recommendations involve monthly IVIG and a dose of Tocilizumab. Whether this gets approved by insurance is another matter—but for now I’m taking things one step at a time, just feeling grateful that she’s stepped into the picture at all.

Counselling and Speech Therapy

Both forms of therapy yielded more gains than last month. I got further into the “meat and potatoes” of each, making some breakthroughs I didn’t expect. I intend to write dedicated blog posts about them at some point.

In particular, EMDR (eye movement desensitization and reprocessing) therapy has been quite positive.  If you have anxiety, trauma, depression, or other issues relevant to your mental health, it’s worth looking into.

Where am I now?

The derealization/depersonalization has abated from the “low” I felt earlier this month, though some days it still persists. It’s so variable. As per usual, the various brain fog symptoms remain most problematic.

Overall, I’d say I’m ending November about the same as October—at about 62.5-67.5% of my cognitive baseline. I’m cautiously optimistic for some positive change in December, particularly if I can get some infusions lined up. We’ll have to see!

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This post is part of my Monthly Resilience Report series, in which I document the ebbs and flows of recovering from autoimmune encephalitis. Previous ones can be found below:

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