MS Patient, Ph.D.: When Old Symptoms Resurface
Pseudoexacerbations might not cause new nerve damage, but quality of life means more than just disease progression
It wasn’t my first time going out to lunch with my 2-month-old daughter, but it was the first time I wouldn’t finish the meal. I had mastered breastfeeding her in public, or so I thought. However, she decided on this occasion to cry inconsolably when I tried to do so. She was so hungry, but nothing I was trying in that restaurant chair (unlike on the cozy couch at home) was working. My husband and I were so uncomfortable, not wanting to cause a scene, that we left the restaurant.
Sure, this is not an unusual scene for any new parent, but by the time I got home, I was so stressed that I had tingling sensations all throughout my back and down my legs and feet. Three hours later and it was gone.
An MS patient learns to live with these pseudoexacerbations. It could be a long day at work, where the fatigue brings on a bit of an old symptom. Or a hot day spent trying to seek shelter while also being sociable. For one reason or another, stress, fatigue, and heat can all trigger these old symptoms, but they never last more than a day or so. Something about these triggers makes nerve conduction in our damaged nerves not work as well. But no new damage is being done, so there are few studies about this phenomenon and even fewer things that we, as patients, can do about them.
I thought about my experience as I read a recent paper in which the researchers did not find that people with major stressful life events had a higher chance of having MS (Nielsen et al., 2014). So it’s not that these events caused you to have MS, but older research shows that if you do have them, the likelihood of an exacerbation (a real symptom) is higher (Mohr et al., 2004). Newer research also shows that a positive stressful experience can be protective, whereas a negative one was linked to increased lesions (Burns et al., 2014).
Historically, the main advice to MS patients is to just not trigger your pseudoexacerbations. The very trendy mindfulness-based and other stress-relieving therapies have been shown to improve quality of life in MS patients (Lovera and Reza, 2013), so maybe I should take that meditation class that my yoga studio keeps advertising.
However, I would also like to see more studies being done to investigate pseudoexacerbations, an issue that affects me on a day-to-day basis the most. Even though there is no new nerve damage when I experience a pseudoexacerbation, the damage that is already done is creating enough problems on its own. A treatment to reduce the frequency of these events would be a huge improvement to my quality of life, since without one I have a daily reminder that I have MS. And as much as I can try to stay cool (both in temperature and temperament), I can’t always predict when life will necessitate otherwise.