I've Got a Feeling
Practicing medicine is an art in many ways. We go through school to learn anatomy, physiology, and how diseases can disrupt the body’s perfect harmony. Our hard-earned degrees make us feel like authority figures, but sometimes our strict education can set us up for failure. In the business this is what we call “real world” medicine, it's where the art comes in. We may learn one thing in class, but once we get out into practice we learn that in real life things are not black and white like the text in a book. This is why I always found it a bit strange when clinicians dismiss patients who describe atypical symptoms of MS, despite the real world evidence right in front of them. Yes- MS can cause pain, hearing loss, and a myriad of symptoms that are not necessarily common. This shouldn’t be a controversial topic!
Knowing an MS relapse is coming
I personally experience one symptom that is questionable, but in the real world I have spoken to a few other people with MS who share it too. Before every relapse I get a feeling that something bad is about to happen. There’s a telltale lump in my throat like I’m about to cry, except I don’t feel sad or anxious at all. It’s not really an “impending doom” or anxious feeling for me, it’s just kind of a gut reaction that I’ve learned precedes relapses.
The concept of premonitions or warning signs, known as auras, is nothing new. People with other neurological conditions like seizures and migraines often get a telltale symptom such as a strange feelings, visual changes, or smells. However, as of now there is no evidence that says they occur in MS.
My experience with warning signs
At first I thought I was a bit nuts, but I’ve had four relapses in the past three years and sure enough each and every time the same pattern develops. All of the sudden out of the blue that lump in my throat forms, and I just know that a relapse is imminent. The first couple of times I went into survival mode. I thought that if I was able to predict it, I could do something to avoid it. Maybe this feeling was like a siren wailing before a tornado touches down, allowing me to retreat to a bunker and ride out the storm. Surely if I rested, got plenty of sleep, drank lots of water, ate my vegetables, and avoided things that were bad for my health my body would reward me for good behavior! Well, no such luck unfortunately.
The second time that I got my “relapse aura” I was really scared, and the unpredictability was difficult to cope with. A week later I was unable to move my right leg, and developed foot drop. I had feared the worst, and as I picked out my first cane and sat in a wheelchair for the first time I felt as though my fears had been confirmed.
Continuing to survive
Luckily I have come a long way since that episode, both mentally and physically which is why when that familiar lump in my throat returned last month I wasn’t nearly as phased. Actually, I was even a little relieved that I even had some advanced notice. It gave me time to stock up on groceries, get ahead on some work, and just generally prepare for the worst case scenario of being out of work and unable to get around by myself. I have come to realize that I have survived every scenario MS has thrown at me so far, and it has made me more confident in my ability to continue fighting.
Does anyone else out there go through something similar, or am I alone on this one? I’d love to hear your stories!
How often do you use assistive devices to help manage your MS?