This is not my normal blog, as my life has been far from normal for the past two months. So sit back, grab a drink, and relax. This is going to be a long one!
This new chapter in my journey with multiple sclerosis (MS) started on December 21, 2016, during a trip to Fort Lauderdale, Florida, to visit my elderly parents. I try to stay clear of South Florida during the most humid times of the year, so heading there in the dead of winter seemed like a good idea — until I got off the plane to find that they were having an unusually warm and humid Christmas season.
Unseasonal Warmth Triggers MS Symptoms
Almost immediately, I started having pins and needles and numbness beyond what I usually have. I spent two days dealing with these symptoms, then headed three hours north to Orlando to see my children. By the time I got there I was struggling, but I was able to push past my MS symptoms and make it through a day at Disney Springs with my children and my wife, Kendra, on December 24. It was a great day, although I struggled to walk and stay coordinated throughout the park.
The next day, however, I was nauseous with a stomach flu and unable to get out of bed, and slept most of that day away. I never really recuperated, although I was able to spend another day with everyone on December 26 and board the plane home the following day.
The plane ride was uneventful until mid-flight, when I was awakened from the short nap I was trying to take, sweating and in pain, full of body tingling. The temperature in the cabin had risen and was very warm. I knew this was not good, and that MS was once more rearing its ugly head on a trip that was supposed to be a rest from the stresses of work — and an opportunity to spend time with my parents and children, who live 3,000 miles away from me.
Emergency Ice Packs on the Airplane
I immediately removed my top shirt (but left my tank top on) and went straight to the flight attendants for some ice water to drink and ice packs to place on my body. From years of experience overheating in the gym, I knew the ice would cool me down and keep the inflammation at bay. Luckily we were sitting in aisle two, so it was a short jump out of my seat to get what was needed, and the attendant was very attentive in helping me stay calm and cooled down.
After about 30 minutes I was cooled off, and the pins, needles, pain, and tingling had subsided. But that episode turned out to be the beginning of a new experience for me in this MS journey: a full-blown relapse.
I had experienced many little exacerbations and symptom comings and goings over the past 11 years of battling this terrible disease, but none had created the feeling that MS was taking a further toll on my body that might alter the course of my life and goals. I had never gone to an emergency room or had a hospital stay since 2006, when I was diagnosed with MS.
But, I thought, this setback may just be that one.
This Can’t Be Happening!
As the weeks went by after my arrival home, I started to notice an increase in my optic neuritis and some slight tingling in the fingers of my right hand, which is the hand that had never previously experienced any MS symptoms.
In fact, my right hand was the only way I could still feel anything I touched. When I held my wife’s hand with my left one, it was essentially nonexistent. My right hand was my saving grace — to be able to hold my wife’s hand, feel her face, and touch her hair. I thought, “I can’t lose feeling in my right hand, or my wife is lost to me physically for the rest of my life.”
I began to panic, lose sleep at night, and do all I could to deny this was happening — again. But as the New Year passed and the tingling increased into numbness, I realized it was not going away.
Still, I just couldn’t bring myself to tell Kendra that her man of iron who had promised that MS would never affect our lives had lied! So I waited a bit longer until the pain, numbness, and now burning sensation had reached to the middle of my spine.
I Can’t Lose Even More Than I’ve Lost
On Friday the 13th, that spooky January night, I awoke with severe right hand and spine symptoms, along with numbness in my neck and around my mouth. I paced the floor, not wanting to get Kendra frightened, then went downstairs and into the bathroom, where I realized I could not focus my vision. The optic neuritis was now full-blown, as was the MS attack on my body.
I flashed back to 2006, when I had ignored all the MS symptoms for two months until I was unable to move much at all from the neck down and was forced into the hospital for five days of testing. That ignorance — and waiting — cost me the loss of my left side permanently. To this day, I am left with a dragging left leg, drop foot, a log of a left arm with no feeling, and a left hand with which it is almost impossible to grasp anything because of the loss of feeling.
It was time to do something.
I woke Kendra out of a deep sleep and told her what was happening. We were a little unsure if the ER was the right place to go at 4 a.m. — when there wouldn’t be a neurologist on staff — and I was scheduled to see my new neurologist at 8 a.m. the following Monday anyway. But Kendra did not think it was worth waiting through two more nights of panic and possibly risking more irreparable damage.
Our decision made, we headed to the Loma Linda University Medical Center ER in Murietta, California, a new facility that is only a few miles from our house. When we got there, we had no wait at all.
To read what happened next, come back for next week’s installment of “Diary of an MS Relapse.”
David Lyons’s new book, Everyday Health and Fitness With Multiple Sclerosis, coauthored with neurologist Jacob Sloane, MD, PhD, offers nutrition advice, a mental approach to fitness, and discussion of the mind-body connection.
Illustration: Jutta Kuss/Getty Images