(this is a continuation of the story that started HERE )
Ah, 1999. My nephew had major back surgery to straighten a severe curvature of the spine. The Czech Republic joined NATO. Clinton was impeached and then acquitted for “indiscretions.” David Lander (“Squiggy”) and Montel Williams went public with their MS diagnoses. The previous year, Richard Pryor received the Mark Twain prize for humor but his MS made him too weak to perform or speak. It was suddenly hard to ignore MS but was still nothing to be concerned about. Or so I thought.
But the biggest story of 1999 was the Y2K computer bug scare (which was a concern with computers recognizing the year 2000 as the year 1900 and shutting down systems as a result) and the doomsday prediction of the end of the millennium. Some people were nervous. Some people were skeptical.
From what I saw, the Y2K bug was a real problem and if some companies hadn’t fixed their date software, like DuPont, they would have had serious problems. I was working as the leader of an international team of help desk managers, and was assigned to a larger DuPont team to ensure that the help desks experienced no loss of functionality as a result of the Y2K bug. I usually sleep through the ringing in of the new year, but this year I enjoyed spending New Year’s Eve at work with lots of people (including Tedd) on phone conferences, eating catered food, monitoring computer systems and TV stations, and drinking champagne. Nothing went wrong (we fixed everything in time), and the doomsayers were a little disappointed that the world did not end.
Earlier in the year, though, there was a different doomsday story unfolding. As I was driving home and pulling into the driveway, I saw that the purple clematis around the mailbox were in full bloom. “How beautiful! They’ve never looked so brilliant,” I thought. Then I hit the mailbox. I scraped the box with the side of my car, but just kept pulling into the garage. I damaged the mailbox and wrecked the side of my car. I was a little stunned.
Later that week, I was notified that our home alarm had gone off and since the alarm company could not reach Tedd or I, they had called the police. The short story is that Merry Maids cleaners were coming that day, and Tedd forgot about it and set the home alarm system. The police took everyone’s names and left.
At the same time, I was notified that my checks were bouncing. Since I’m very conscientious about balancing my checkbook, I examined my bank statement and saw a check for $2,000 that was out of sequence. I called the credit union, who faxed me a copy of the check. An obvious forgery. One of the maids from Merry Maids had stolen two checks, one from my checkbook and one from our joint checkbook. Ironically, she stole them on the day that the police took names so we knew who was in the house. Then they were cashed at a store with cameras filming the person who cashed them. We got the money back and she went to jail.
A few weeks later, I walked to get my haircut one pleasant summer day. The salon is only two miles from home and I enjoyed a pleasant walk in the early evening. I got my cut and went to the counter to pay my bill when I felt my right toes cramp up. Just a little cramp. I tried to stretch it out and wait for it to relax, but then it got a lot worse and became incredibly painful. I then realized that my entire foot and right calf were cramping and I was clinging to the counter to keep from falling. I croaked some words explaining that I’ve got a cramp and please help me to a chair. Then the cramp climbed up my leg and continued climbing. I tried to sit down but didn’t make it. I found myself on the floor in terrible pain with my right arm and hand cramped, also. I heard one woman say, “I’m a nurse” and I felt a towel under my head. I saw people over me and one woman asked me “Should I call an ambulance?” I could barely talk. I was terrified because this cramping had engulfed my entire right side and was working toward my heart, lungs and stomach and I felt like I was being crushed so I whimpered, “YES, call an ambulance.”
I was terrified and confused. I had never experienced such a thing and never read about this in the MS literature so this could not be MS. The nurse said that all my muscles were in spasm and she tried to massage my thigh and hand. After a few minutes, the cramping relaxed and they cancelled the ambulance. I sat in the salon’s waiting room for about a half hour then walked home, staying aware of soft spots in the terrain in case I cramped up again.
I blamed the stress from wrecking my car and bouncing checks and dealing with the police for the strange cramping and didn’t think more about it.
But a few days later I was sitting at my desk in the Newark Data Center when I felt the cramping again. I got someone’s attention and asked him just to hold my hand and help me to the floor until it passed. I knew what to expect so didn’t panic quite as badly as I did the first time. It passed in about two or three minutes, but my co-worker was so shook up he got my supervisor. It was no longer a secret that something was wrong with me.
I had never heard of anything like this and did not see this as a symptom of MS, so I checked in with my chiropractor because I saw him regularly and he was good at pointing me in the right direction. The chiropractor suspected a number of problems such as a magnesium or potassium deficiency, but said I really needed to see a neurologist. So I called one and took the earliest appointment I could get, which was for six weeks later.
A few days later, Tedd and I went to the movies. We stopped at the post office on the way home, and I ran in to mail a letter. In the lobby, I felt the cramping start so I immediately lay down on the floor and asked someone to come and hold my hand and just talk to me to keep me distracted. The spasms passed in 2 or 3 minutes, and by the time the people were helping me to stand up, Tedd had come in looking for me. We went home, and I went in the house while Tedd checked the mail. He was only outside for 2 or 3 minutes, but while he was out another spasm hit me. This time I was completely alone with no one to hold my hand or tell me stories to distract me and he found me thrashing on the floor screaming my head off.
A few days after that I had a spasm at work while talking to a woman whose husband was just diagnosed with MS. She got me to the floor and talked me through it until it passed.
When I finally saw the neurologist, he first requested an EEG. During the test, the technician had me hyperventilate and I went into a spasm. But I had warned her what to do if it happened and she came over and held my hand and talked to me until it passed. The neurologist jokingly said that it was very considerate of me to have an attack while hooked to the machine because he was able to see that I did not have epilepsy.
These spasms continued for over two months, each episode lasting about 2 minutes. It was very scary to think that I did not know when one would hit. Shortly after, I had been on an airplane and was trying to figure out what to do if one hit. I also went to a weeklong leadership class sponsored by my church, and I was terrified that an attack would hit. But I was spared in both cases.
This episode triggered me to see a neurologist in Delaware, which led to getting an MRI (yes, the pin in my ear is stainless steel so is not magnetic) and a spinal tap. And this time I told the doctor about that pesky shock effect – he knew exactly what I was experiencing. After months of tests, second opinions at my neurologist’s request, and various consultations, I received a positive diagnosis of MS. I was no longer a “Maybe Baby.” I started on Copaxone in Dec 1999, a daily injection of a non-interferon drug to slow the progress of the disease. At that time, I was working 12-hours shifts with teams to ensure readiness for Y2K, and I remember giving myself a shot one night while on a conference call with the help desks in England, Germany, Singapore, Oklahoma, Houston, and Delaware. What a year it was for all.
I have since learned that this horrible symptom has a name: spasticity. It is a common problem with MS. It’s unusual for the spasms to be as severe and to come and go like they did; normally the muscles just stay tight making it difficult to walk. Of all my attacks, this was worse than the blindness and the dizziness and the pins-and-needles just because of the unpredictability of the attacks. I didn’t know when they would hit, how long they would last, if I would be able to get through it without screaming. But now that I’ve gone through it once, when I get some leg cramping I know that it will be okay – I’m used to it now.