I was sitting on the couch watching TV with my then boyfriend, now husband, on a Thursday evening. I absentmindedly scratched my right leg and thought to myself “that feels a little funny”, but I went on with my evening and didn’t think anything else of it.
At least until Saturday morning.
When I woke up Saturday morning, I couldn’t feel the entire right side of my body. I was having my first relapse.
Relapses can come in many forms, from not being able to feel parts of your body, to having significant weakness or fatigue, to not being able to see. Regardless of the symptom experienced, they all have one thing in common, they are downright terrifying. When some parts of your body that previously worked fine all of a sudden malfunction, no amount of knowledge can prepare you for that initial shock. Yes I knew what was happening, yes I knew what my next steps would be, but that didn’t make up for the fact that I couldn’t feel half of my body.
Relapses occur when there is active damage being done to the myelin coating the neurons. The specific neurons that are damaged will determine which symptoms are experienced. For example, damage on the optic nerve will cause optic neuritis and damage in the cerebellum may cause issues with balance and coordination. During a relapse there maybe one acute symptom present due to one spot of inflammation or several symptoms due to several spots of inflammation. Symptoms must be present for at least 24 hours and at least 30 days after a previous relapse to be a true relapse.
When I was first diagnosed, and learned about the concept of “having a relapse”, I thought oh that will be easy to tell when that’s happening. But that couldn’t be further from the truth. On top of my 3 actual relapses, there have been numerous situations where I thought I was having a relapse, but wasn’t. I experienced a new-ish symptom, and felt terrible, but no relapse.
There are several things that can contribute to a worsening of symptoms that do not include a relapse. This situation is called a “pseudo-exacerbation”, and can be brought on by heat, stress, fatigue and illness. A pseudo-exacerbation is a worsening of symptoms that is not caused by actual disease progression. Just because the word pseudo is used, doesn’t mean that anything about this is fake. These are actual symptoms, that are actually worse, they are just not caused by an actual relapse. Usually the symptoms subside when the trigger subsides. For example, when it’s super hot outside or if my body temp rises, my left leg gets really uncomfortable and starts to burn. But when I cool down, that feeling goes away.
So how do you know if it’s an actual relapse or not? The only definitive way to actually know (sorta) is by doing an MRI. When you do an MRI, with contrast, the active inflammation and spots of damage will show up. The spots are called “enhancing lesions”, these are the white spots that light up brightly on an MRI. However, MRIs are not perfect. You can still be having a relapse even if “enhancing lesions” do not show up. How frustrating is that!
Relapses can be a very scary event, especially if it’s your first one. During a relapse is a great time to make use of your support network and reach out and ask for help. This is not the time to be adding more to your plate or try to do everything. If you think you’re having a relapse, or are experiencing new symptoms, your best bet is to contact your doctor and discuss options.