When Is It An MS Exacerbation?

Hands down the hardest thing for me to learn after being diagnosed with MS was discerning when I’m having an exacerbation (new MS disease activity where the immune system is attacking my nerve insulation), when it’s just existing symptoms acting up, and when it’s something not related to MS. Feeling confident in being able to tell the difference has been the biggest stress reducing skill I’ve learned, and it’s allowed me to relax when symptoms occur.

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:

1.    What are the symptoms? Have I had these symptoms before? What was the cause last time I had them? Would it make sense for it to be that again?

2.    Decide if it’s a pseudo-exacerbation where old symptoms are temporarily acting up:

a.    If it’s an old recurring symptom, is it occurring after a workout or at the end of the day?  Is it hot or cold out? Do I feel hot from anxiety, exertion, or the weather?

b.    Does it go away after a couple hours or by morning?

3.    Could it be something other than MS:

a.    Is a cold or flu making the rounds? Does anyone I know have it? Are my symptoms similar to theirs?

b.    Would an injury explain it? Any changes in medications or food lately?

c.    If the symptom isn’t usually MS related, what does Web MD say? 

4.    Consider it may be an exacerbation:

a.    Is my fatigue at an extreme level or more than usual for me?

b.    Is the symptom something I know to be typical for people with MS?

c.    Is it an old symptom for me that seems to be worse than in the past?

d.    Is it a new symptom for me, common for MS, and scary? I would immediately call my neurologist if I ever experience blindness or paralysis.

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!