Is This New Symptom a Flare - or a New Lesion?

Getting to know my body through my journey of living with NMO has been a scary learning experience. I was diagnosed with NMO in 2016, and I’ve experienced so many emotional scares because of the unexpected that I’m expected to live by - if that makes sense. I’ve always feared every single symptom since the beginning of my diagnosis. I get caught thinking that it would be permanent, an NMO flare, or a new lesion.

Fearing the worst, no one and nothing prepares you for the emotional roller coaster you're about to embark on after being diagnosed with NMO.

The anxiety of experiencing a new NMO symptom

As soon as I felt a new symptom, I would frantically call my primary care provider or the neurologist's office as if they had a magic wand with instant answers or relief. Since NMO was new to me at the time, I was afraid of every little symptom. I mean, Google did say I was going to die in 5 years!

New NMO symptoms mean MRI scans (ugh!)

Every time I had a new symptom, my neurologist would send me to get an MRI. I despise them. Every time I had to get an MRI, I had to talk to myself like it was a life-or-death situation. I kept telling myself, “you got this!”. I had 5 MRI scans in one year. Though it may not seem like a lot, they were each about 4 hours staying still in a coffin-like tunnel. Horrible!

Learning to understand my body

With time, I started studying myself. I noticed when my symptoms started and why. For example, every fall season, I would always get cold. My NMO symptoms would include numb fingers, blurred vision, extreme fatigue, spasms, and an uncontrollable bladder. When I got better, I’d bounce back to my baseline: 20/20 vision, feeling energetic with a somewhat controlled bladder.

Tips for studying yourself: write it down

Observing and studying yourself will help you tremendously on your new journey with NMO (or any new diagnosis.) One suggestion I have is keeping a dated notebook on your symptoms. You'll know what happens on the exact date and the activity you did. For example, the types of foods or drinks you put into your body can sometimes make a difference, like spicy food and alcoholic beverages. For me, the change of season affects me tremendously. I’m pretty sure everyone that has NMO or a similar diagnosis can relate. Keep track of what heat and humidity does to your body, compared to cold temperatures. Stress is another big factor as to why my symptoms tend to worsen.

NMO flare = new lesion? Not always!

I’ve learned that not all new symptoms are indications of a new lesion. I haven't had a new lesion since my diagnosis six years ago. I was just not listening to my body close enough to know that whatever was happening in my environment wasn’t healthy for me. I invite you to take a good look at your environment - and take notes.

Who knows, this could also become part of a new self-discovery journey for yourself! You will maybe even set healthy boundaries that benefit your well-being. It may change your habits which will bring you beneficial outcomes. During the process, you will likely become the best advocate you can be for yourself!