What was the first of the MS symptoms you noticed? I’m asking this because of a new podcast that a friend is producing…but more about that later.
My first symptom — the one that made me realize something was really wrong — was my inability to squeeze the toothpaste tube with my left hand one morning. Of course, there were earlier hints of trouble. I was unusually tired while attending a business conference. On the flight home from that conference, I felt spacey — there’s no other way to describe it. Another time, I accidentally drove through a red light because my peripheral vision suddenly narrowed and I failed to see the traffic signal to my right.
My wife made fun of me for complaining my legs were getting tired after only a couple of runs down an easy ski slope. One day she accidentally tapped my left foot and it began to shake. It was clonus, another MS symptom. I didn’t know that, but my wife, a physical therapist, did.
I saw a doctor, and when she tapped my left knee with a rubber reflex hammer, my leg shot out so fast and far that I kicked her in the stomach. But it was my weak left hand that bothered me the most. I knew, after trying to ignore things, that I wouldn’t be able to squeeze this toothpaste back into the tube. That was in 1979. I was diagnosed in August 1980.
A lot of symptoms on my chart
Since my diagnosis, I’ve lived with a medical chart full of symptoms, as most of us do. The most debilitating has been my left foot drop and my general leg weakness. It’s hard to walk more than about 100 steps, even using two canes and a Bioness L300 Go functional electronic stimulator. Other symptoms include fatigue, heat sensitivity, spasticity, restless legs in bed, and bowel and bladder problems. Oh, of course, there’s also “cog fog.” I almost forgot.
My bladder and bowels have improved over the past few years, as has my fatigue. My vision problem only occurred that one time, and my weak left hand returned to normal after my first infusion of the steroid Solu-Medrol (methylprednisolone).
Your symptoms may vary
I’m revisiting these symptoms because of a project recently started by my friend and MS patient advocate Laura Kolaczkowski. Laura has begun producing the podcast “MS Diagnosis Journey.” It’s a series of short chats with people with MS about how they discovered their illness, the diagnostic tests they took, their experience with neurologists, and the like. It’s all information that’s likely to be especially interesting and useful to MS “newbies.” The podcast series can be found on all the major podcast platforms or you can get it on the Buzzsprout website. My interview was published today, May 12.
I also just discovered an A to Z listing of MS symptoms in the latest issue of Momentum, the National MS Society’s magazine and blog. The story includes 23 symptoms, such as fatigue, the “MS hug,” and kissing issues. (The letters X, Y, and Z are rolled into a “ways to live well” lump.) It’s an interesting read.
(A version of this post first appeared as my column on the MS News Today website.)
