If you’ve ever dealt with an Multiple Sclerosis (MS) pseudo flare, you know how confusing and scary it can be. Is it the start of something bigger? Is this a real MS flare? Or is my body just reacting to stress, heat, or some other trigger? That’s exactly where I found myself this summer—caught between thinking it was just stress from moving and the nagging worry that it could be something much worse. I want to share my story of navigating this pseudo flare, including how it started, what I learned, and what you can do if you ever find yourself in a similar situation.

What is a Pseudo Flare in MS?

First, let me explain what a pseudo flare is with Multiple Sclerosis. A pseudo flare is when a person with MS experiences new or worsening symptoms, but there are no new lesions or inflammation on the brain or spinal cord. The symptoms can mimic those of a true flare and are often triggered by external factors such as heat, stress, or illness. But the silver lining is that there’s no real progression.

So essentially, a pseudo flare is your body’s way of reacting to these stressors without active disease progression.

How My MS Pseudo Flare Started

For me, it began with a dull feeling in my left leg. You know that moment where you’re not even sure if you’re actually feeling something or just imagining it? That was me. It was subtle at first, so I brushed it off. But then it started creeping up my leg, and I couldn’t ignore it anymore. I started to get nervous because the left side is where MS tends to affect the body most. So alarm bells started ringing in the back of my mind.

But like most of us with MS, I found myself debating if I should call my neurologist or just wait it out. I didn’t want to overreact, but I also didn’t want to miss the chance to catch something early. You don’t know if it’s a pseudo flare or true MS flare. A week later, when I noticed that same feeling creeping into my left arm, my nerves really kicked in.

To add to the situation, I was in the middle of packing up my house for a big move. Stress? Check. Physical exhaustion? Check. The hottest summer ever? Triple check. I kept thinking, “Maybe this is all just because of the move. Maybe I strained a muscle.” But the doubt lingered. What if this wasn’t just stress? What if it was something more?

When I Decided to Call My Neurologist

I finally reached out to my neurologist—not because the symptoms were unbearable, but because they were moving up my body. That’s what worried me most. She suggested we take a “watch and wait” approach. Easier said than done, right?

To complicate things further, I had a work trip planned to Connecticut right in the middle of all this chaos. My husband and I debated whether I should go. Ultimately, we decided I should, thinking I’d actually rest more there than if I stayed home. But as the trip went on, I started feeling something I absolutely didn’t want—trigeminal neuralgia. If you’ve ever had it, you know what I mean. Brutal, searing pain in the face. That was my tipping point.

At that point, I knew I needed to get checked out to understand if this was a pseudo flare or true MS flare. My neurologist told me I’d need to go through the ER if I wanted an MRI quickly. Cue the anxiety of having to leave my work trip early, figure out the logistics, and admit to myself that this might be more serious than I wanted to believe.

Going to the ER for an MS Pseudo Flare

By the time I made it home and to the ER, my nerves were shot. I waited 12 hours—yes, 12 hours—before they wheeled me into the MRI machine. By the way, this is where I had one of those “am I overreacting?” moments. Sitting there, I thought, “What if this is just stress from the move? Am I being extra?” But I couldn’t ignore the fact that something felt off.

They finally did the MRI at 1:30 a.m. (seriously!), and after all that waiting, it turned out to be a pseudo flare. You’d think I’d be relieved, and don’t get me wrong—I was. There were no new lesions, no new disease activity. But at the same time, I was frustrated. I was still dealing with the symptoms, but now with no clear plan to make them go away.

The Importance of Self-Advocacy

Here’s the kicker… a first-day med student came in to deliver the news. I wanted someone experienced with MS to talk to me, not someone learning the ropes. After weeks of stress, I felt like I deserved more than a brief conversation about a pseudo flare. It reminded me just how important it is to advocate for yourself in the healthcare system—especially with MS. Don’t be afraid to ask questions or push for answers. You know your body better than anyone.

What Triggered My Pseudo Flare?

Now, looking back, it’s pretty clear what triggered this pseudo flare. The heat. The stress. The physical demands of moving. All the classic MS triggers, wrapped up into one chaotic summer. Heat, in particular, is a huge trigger for me (and many others with MS). It can mess with nerve signals, making it feel like you’re having a flare even when you’re not.

But now that things have calmed down and we’re settled into our new home, I’m feeling much better. Fall is here, and I’m back into a routine that helps me keep my symptoms in check.

How to Manage MS Pseudo Flares

If you’re dealing with a pseudo flare—or even just worried about one—here are a few things that have really helped me:

1. Stay Cool: Heat is a big trigger for me. Cooling packs, air conditioning, cold showers—they’re my best friends during the summer.
   
2. Manage Stress: Easier said than done, right? But seriously, I’ve found that even just a few minutes of mindful breathing or stretching can help keep my stress in check.
   
3. Rest: When you’re feeling new symptoms, don’t push through it. Give yourself permission to rest. I know it’s hard, but your body needs it.
   
4. Focus on Diet: For me, as a Nutrition Coach specializing in MS diet certainly plays a huge role in managing MS symptoms. I’ve found that sticking to a nutrient-dense, anti-inflammatory diet makes a big difference, especially during flare-ups.
   
5. Speak Up: Don’t be afraid to ask questions or push for the care you deserve. Whether it’s a neurologist or an ER doctor, you have the right to get answers.

What My MS Pseudo Flare Taught Me About Living with MS

This pseudo flare wasn’t fun, but it was a reminder of how unpredictable MS can be. It also confirmed something I’ve always believed—there’s a gap between conventional medicine and day-to-day MS management. While conventional medicine is great for diagnosing and treating big flares, it doesn’t always have answers for the smaller, day-to-day symptoms we live with.

That’s where diet, lifestyle, and stress management come in. They aren’t a cure, but they do help improve quality of life. If you’re in a similar place, dealing with a pseudo flare, I hope my story gives you some comfort. You’re not alone, and there are ways to manage it.

Take care of yourself. And remember, it’s okay to prioritize your health, even if it turns out to be “just a pseudo flare.”

Want to hear more of my story? Tune into My MS Podcast where I share all the details about my pseudo flare.