More time has passed since my first blog entry than I would have liked, but I’ve been busy and have had a couple of “firsts” to talk about — but I’ll save that news for a future post. With this post, I’ll focus on my medical history, in case it is of interest to anyone. I would be particularly interested to know if anyone else out there with M.S. has experienced a similar medical history.
I was born in Detroit, MI but my family moved to eastern KY between 2nd and 3rd grade. Up until 5th grade, I was quite healthy, if not a wee too plump (we moved very close to both grandparents, and the grandmothers believed in stuffing their grandchildren full of good food and yummy baking creations). One day, when I was 10 years old and riding the bus to school, something odd happened. I noticed, first of all, that I seemed sensitive to noises. No … the sensation was more than just that … the noises around me seemed distorted, kind of like how, in an action show at a dramatic moment, the motion is slowed down and the protagonist yells “Nooooooooo” but in that slowed-down, low-pitched tone. You know what I’m talking about.
Well, that kind of slowed-down, surreal, distorted way of seeing the world is what I suddenly started to see, while minding my own business on that bus. At about the same time, I started seeing strange things, too. The back of the head of the person in front of me looked like one half was missing. And then I noticed that nearly everything looked like half of it was missing. And to top that bizarre phenomenon off, I started losing feeling in my hand, the numbness traveled up my arm, and my lips and tongue also went numb. I found that when I would try to reach out and grab something, I couldn’t seem to judge distances well at all. My hand would seem as if it were impossibly far away from me when outstretched. When I touched my other hand to my “numb-like” hand, it felt as if I were touching someone else’s hand. A very odd sensation. in the middle of this almost-hallucinatory “trip”, my seatmate asked me if anything was wrong. I found that I couldn’t answer without slurring my speech.
By the time we arrived at school, I had one more symptom, which was the scariest of all: I suddenly couldn’t remember. Anything. I knew enough to go to the principal’s office rather than try to go on into my homeroom class, but not only could I not speak due to my numb, thick tongue, I couldn’t remember my name, or my phone number, or any other personal information when asked.
Finally my mom came to pick me up, worried herself sick over me (I know that she thought that I was dying … hell, I thought I was dying!). And then, I got the worst godawful headache I have ever had. I slept for maybe 12 hours or longer. But when I got up the next day, I felt truly refreshed, as if nothing had ever happened.
This episode was repeated numerous times, with decreasing frequency as I grew older. My parents sought the advice of many doctors, and none of them knew what was going on. I had an EEG, which came out normal. I spent a couple of nights in the hospital, to be monitored, and nada. Finally, in a moment of exasperation, one doctor told my mom that “it can’t be anything serious because she is still alive”. Unbelievable! That’s medical care in a small mountain town for ya!
As an adult, I get these episodes maybe one or two times a year, considerably less frequent that the once or twice a week that I was getting them when I was young. I have since learned that these are textbook examples of “classic migraine with aura”. The aura is that funny business that happens before the headache starts (and, incidentally, is thought to be an affliction that Lewis Carroll had. The distorted visuals that I often get are even named in his honor: “the Alice-in-Wonderland” effect). These episodes seem to be completely uncorrelated with what I ate, what phase of “my cycle” I’m in (I hate that phrase!), how much sleep I’ve had or what the stress level is. And they can sometimes strike at very inopportune times, like when I’m about to give a presentation or the like, as my profession occasionally demands of me. The funny thing is, I *never* get the flu or cold or the most recent bug going ’round. And these days, I often get the aura without the headache part. Just the other week, my arm and hand got that “funny feeling”, and I must have instinctively used that hand to brush away some hair that was getting in my eye. But somehow, my hand did not inform my brain that it was going anywhere, and I caught my hand motion in the corner of my eye and nearly had a heart-attack, because it was just like someone was reaching in towards my face. The fact that, these days, I get this “aura feeling” for a week or so at a time makes me wonder: how does one distinguish between migraine aura and MS symptoms? But I get ahead of myself …