Am I Having a Relapse, or Am I Going Crazy?
I’ve often wondered if it’s just me who questions my intuition on whether or not I am having a relapse. It would be obvious, for instance, if I went blind or if one side of my body went numb. Other times, I spend hours wondering, "Is this an extended bad MS day, or am I relapsing?"
Symptoms returning with a vengeance
There are medical parameters which outline a relapse, but even then, are my symptoms enough to be classified as a clinical or disabling relapse and thus, warrant chasing down treatment? There’s also the emotional component of my inner self screaming “no, no, no, no, not another one!”
In the 9 years since I was diagnosed (2014), I relapsed on average 1-2x/year. I was diagnosed during a doozy of a relapse. I used that relapse as the baseline of comparison for me in the future. At the time, I had had a swift decrease of bodily function, high pain, and my brain felt like the Everglades swamp. I had eight infusions of IV methylprednisolone (IVMP), and each time my body responded magically. I was briefly like my old self, pain would decrease, and I could stand/walk again. But unfortunately once it wore off two weeks later, to my horror the symptoms came back, often with a vengeance.
Being dismissed by doctors
After that first relapse stabilized, I relapsed soon after while on a first-line MS drug. The same type of body decline occurred; except this time, it wasn’t so clear cut. I tried to reach my MS team, but it was like squeezing water out of a rock to have my voicemails returned back then. This exasperated me immensely as I was newly diagnosed, cognitively affected, and untrained on how to effectively advocate for myself.
Once I finally had their attention, I would mutter in between tears, trying to describe my symptoms. Without any certainty of my situation, I ended up being gaslit and dismissed. I felt crazy: did I imagine all these horrible symptoms? They effectively just told me I did, so I did, right? No, of course not, but in the future, I had to learn how to effectively communicate my issues, and unemotionally.
Is it a relapse?
Relapses for me are typically sensory in origin such as pain, nerve zaps, random muscle contractions, worsening of sensory dysfunction, proprioception, and increased neurogenic bowel/bladder. But not always. Sometimes it’s cognitive with an increased inability to process information, a failure to pronounce or find words, or finish a sentence.
Most of us have bad days, so how could I discern a relapse from an extended bad MS day with a myriad of symptoms that daily spiral up and down?
How I try to figure it out
First, I bought little notebooks and wrote down each day’s symptoms, sleep, and medications. I had to write things down immediately, or I’d forget them. They had to be summarized with quantifiable measures of severity such as: 5/10, or 8/10, etc. I also took inventory of my mental state. The worse my symptoms were, the worse my mental state was. This didn’t mean I was depressed; I was simply experiencing situational depression. (Note to self: offer self-compassion during these times).
Second, I dictated into the notes section of my phone if my fingers were problematic. Third, I’d make videos of my movement on good days, then I had a baseline of movement function for the future.
A cognitive relapse is a really tricky one to figure out. I check my notes from the past to compare it to my current cognitive issues. It’s especially hard if the relapse has affected my brain’s ability to separate specific issues from others (emotional, memory, fatigue, analytical, spatial time recognition, etc.). It's really hard! And even harder to convince my MS medical team it's a cognitive relapse.
I am lucky after all these years of IVMP/prednisone/dexamethasone, all still work magically for me. To help self-diagnose my "maybe relapses," I started doing my own test system (approved from my medical team) by taking small doses of prednisone or dexa. If it worked to alleviate the symptoms, then I’d know I’m relapsing. The final confirmation was when the symptoms reappeared after the prednisone/dexa wore off.
Giving myself more control
I am a pwMS who relapses without proof on MRI. I wish it were clear cut, as that would alleviate the endless self-guessing. Relapses are terrifying for me, as I never know how long, nor how deep I’ll fall before I hit bottom. Nor whether I’ll have any recovery after months of rehabilitation.
Relentlessly advocating and ensuring my neurologist documents all my relapses are paramount. Without documentation of relapses, this may preclude me from future choices of DMD's which have a prerequisite of yearly relapses in the absence of new MRI activity. Sometimes though, advocacy fatigue grinds me down and I let small relapses slide by quietly, but not reporting them can have huge ramifications. I like having treatment options, as it gives me some form of control over an uncontrollable disease.
Would it have been helpful to hear from others and their experiences when you were beginning your MS journey?
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