My First Infusion: Showing Up for Myself
This Friday is my first infusion aimed at slowing the progression of my MS.
Back in May, I was diagnosed with Primary Progressive Multiple Sclerosis (PPMS) after several years of symptoms that I didn’t realize were connected. What I had once “googled” as possibilities finally became a confirmed diagnosis through neurologists, internal medicine, endless appointments, bloodwork, MRIs, hours of iron infusions, and even a spinal tap.
With PPMS, symptoms gradually worsen over time without the ups and downs of relapse and recovery. That means Friday represents my first real opportunity to slow the progression. Now’s the time to be the tortoise, not the hare.
Finding the Right Team
When the spinal tap confirmed what my care team suspected, I was referred to a neuroimmunology specialist at UNC Chapel Hill. That referral was the turning point.
At UNC, I found doctors who truly listened, validated my experiences, and reviewed every scan, test, and symptom with care. My list of symptoms was long:
Restless leg syndrome and migraines leading the charge
Severe joint pain
Losing words mid-sentence or forgetting things I once never forgot
Swelling in my ankles
Weakness in my leg, arm, and hand
Fatigue (the unbelievable kind)
Anxiety, numbness, tingling, and even bouts of high blood pressure
For the first time, everything was being connected.
Choosing Treatment
During one appointment, my doctor, my husband, and I discussed treatment options. Since this is primary progressive, there’s currently only one medication that can slow the disease.
Symptom management, however, is possible. I started with the fatigue—I wanted to stay awake past 6 p.m., maybe go out with my husband, friends, or family again. The treatment, plus coffee (of course), has helped.
Other symptoms are tougher. Restless legs remain a constant battle with no cure, and walking is challenging—I drag my foot for at least one mile of my daily two-mile walk. A brace now helps with stability, though I miss walking our two German Shepherds. We even looked into service dog training for them, but they were already past the recommended age. So much for teaching old dogs new tricks! Still, I feel like we’re moving (no better word for it) in the right direction.
Preparing for Infusion Day
To my surprise, preparing for this first infusion has been easier than I expected. Everyone—insurance, scheduling, doctors—has been supportive and encouraging.
Even better, I don’t have to make the two-hour drive to Chapel Hill. Instead, I’ll head to Supply, NC, which just happens to be near one of my client’s new construction homes. It’s framed and almost ready for drywall—a very exciting stage to check on!
My husband will be with me, as he has been every step of this journey. His support has been incredible. For once, I don’t feel nervous or anxious—I feel hopeful.
Choosing to Show Up
Like any medication, this infusion comes with possible side effects. I haven’t even read the list. Honestly, with everything going on, I might not notice most of them. I’m realistic: I probably won’t feel different after the first dose, or maybe even the second or third.
But what I do know is this—I will show up. For myself, and for my family.
Beyond MS
I’m grateful you’ve taken time to read this, whether it’s because you’re going through something similar or simply because you care. This post isn’t just about MS. It’s about loss, unexpected change, and the grief that comes with it.
Feeling like no one understands is lonely. I haven’t always wanted to talk with others going through MS because everyone’s journey looks so different. But what I do know is that if you’ve ever thought about moving forward and showing up—despite the weight you carry—then maybe we aren’t that different after all.
Let’s keep the conversation going. Leave a comment, share your thoughts, or simply help build a community without judgment.
