During the first few years after being diagnosed with MS, I couldn’t tell at any given moment if my immune system was acting up and I was in the midst of an exacerbation. Living like that is stressful and created a loop of worry that the stress would trigger an exacerbation. It took years of monitoring my health and reviewing the MRI scans with my neurologist to reach the tipping point where I feel I can distinguish between MS disease progression and life as usual.
My MRI scans showed I’d obviously had MS for years when I was diagnosed, but I only recalled fatigue as an issue. By paying attention to symptoms between MRI scans and then comparing how I felt to the scan results, I could make conclusions about what was or wasn’t an exacerbation. Having a couple of scans that didn’t show new MS lesions were extremely helpful, because then I could conclude that symptoms I’d felt during that time period were pseudo-exacerbations.
Each person with MS has different symptoms and disease activity, and each person will have different triggers. By sharing my mental checklist for self-diagnosis with examples, perhaps it will help you create your own:
I’ll have old symptoms act up after a workout, when the weather is hot, after a long day, and sometimes after an alcoholic drink. Symptoms triggered by hot weather or a workout will usually subside after a couple hours of cooling down my body. Numbness from a long day or alcoholic drink (or both!) will be gone by morning.
If it’s likely that it isn’t MS related, then I’ll take care of it myself or call my primary care provider. It’s important to take care of any infections quickly since they can lead to an exacerbation.
If it’s a new symptom that is typical for people with MS, I’ll call my neurologist and talk it through with him. My neurologist encourages me to call whenever I feel the need. I live two hours from the clinic, so I appreciate that he’ll talk to me over the phone. These conversations allay my concerns, confirm an exacerbation, or make it clear I need to see someone else to figure out the problem.
Life is extremely stressful when worrying an invisible disease could be active in my body at any time. Doing some detective work on my health has been the best way to reduce stress, build confidence, and enjoy life. It takes a lot of effort, but it’s worth it!