How It All Began…
I have spent a lot of time trying to figure out when I started exhibiting the earliest symptoms of MS. I was diagnosed in April of 2014 but I knew, long before my date of diagnosis, that something was really wrong. I just couldn’t put my finger on it and it was a concern for me for a very long time. I learned to ignore the symptoms because there was never anything so severe that it could be pinpointed. In 2004 I went in for an MRI after experiencing the most concerning symptom yet – tingling and partial loss of sensation down the entire right side of my body – like my body was cut in half – even my tongue. But, a neurologist ruled out MS and I was relieved when the tingling went away (mostly). After 10 years, the tingling and partial loss of sensation came back – only on the left side this time. And this time, I put all the other symptoms I was experiencing to a lesser degree together and realized that I DID actually have MS. I convinced a doctor that I had enough symptoms to warrant another MRI which precipitated another neurology work-up and confirmation of my fears. In talking with my neurologist, we concluded that I probably had been living with relapsing-remitting multiple sclerosis for 15 years or more and I’ve been trying to pinpoint the beginning of my neurological troubles for the past almost 2 years.
So, I think I’ve finally figured out the year MS showed up in my life. It was 1994. I had always been an active, fun-loving, full-of-life person. I was a night owl too. I turned 21 in 1993 and a friend introduced me to dance clubs. I never was a drinker but I loved dancing. We went to ladies night at our favorite clubs so we could get in for free. We got to know the bartenders and bouncers and, as the designated driver, I got my drinks (usually Coke) for free as well. And the bouncers often walked us to the car and generally watched out for us to make sure we were safe. We went out dancing almost every night. And we had full-time jobs. We’d go to work early in the morning, come home and immediately take a nap. Then, we’d get up at about 9:30pm, get something to eat and head for the dance club. We’d dance until 2am when the clubs closed and head home for bed and the next day we’d do it all over again.
In July of that year, I developed a bad case of strep throat and in December I developed mononucleosis. I was never the same after that. I started having balance issues. One time at the dance club I wiped out a whole dance floor full of people doing the Electric Slide because I lost my balance and couldn’t recover. I ran into the bar which is what prevented me from falling to the floor. I don’t think people were too happy with me – they probably thought I was drunk but, like I said, I don’t drink. I’ve never liked alcohol so it’s not hard for me to go to places that serve it and only drink a Coke. My energy level never recovered either.
By January of 1994 I had stopped going out dancing. I stayed in, was inactive for the most part and gained a bunch of weight. I could sleep for an entire Saturday and still sleep all night. I did that pretty frequently. My balance was never the same and by 1998 I was starting to have other problems. I fell down a flight of stairs and sprained my knee and I started having real trouble dialing a push-button phone. I just couldn’t get my fingers to do what my brain was telling them to do. I had to dial and re-dial probably 15 times before I could finally get the correct phone number plugged in to the phone. It was such a frustrating exercise that I dreaded having to make calls at work. And I was TIRED. All the time. But I had a very busy and responsible job that took a lot out of me and I was going to school in the evenings for part of that time so I thought I was just burned out.
I got married that year and my husband lived all the way across the country. I looked at the move as an adventure and it really was. I got a job that was significantly less stressful and yet, I was still tired. I thought it was just taking me some time to get over the burn-out. We moved to New Mexico after that and there, the jobs were sparse and the one I found was so simple I could have done it with my hands tied behind my back and yet, I was still tired. We moved to Phoenix after that and that’s when the heat started getting to me. And so did the cold. Air conditioning didn’t agree with me – I was freezing all the time. But the heat just about killed me off. I got so sick of the heat and the sun that I started getting angry. I just wanted it to rain! But then again, I AM from Seattle so I thought it was just that I wasn’t used to the heat and needed to get back to the rain.
We moved back to Seattle in 2001 and I was feeling so much better – the cooler, wetter weather agreed with me – or so I thought. As I mentioned, in 2004 is when I really started experiencing serious symptoms – right after we bought our house. And it all went downhill from there but everything seemed easily explained away. I was able to dial a phone again. My balance issues were still there – I fell several times just walking on flat sidewalks and ruined several pairs of pants because I landed on my knees. My husband thought I was just clumsy and honestly, so did I. We had our daughter in 2009 and our son in 2011. I fell during both pregnancies and again after my son was born. I have weak ankles though and a doctor said I needed surgery or physical therapy to correct the problem. I had physical therapy on my ankles in 2011.
I started having trouble staying awake in the early evenings in about 2005, but by 2011 I started having difficulty remembering things and learning new things. My energy took a nose-dive in 2009, but I was working full-time and caring for a baby. I just thought so many of my symptoms were related to having babies – bladder and bowel issues, fatigue, forgetfulness, etc. Even when the tingling started and the partial loss of sensation on my left side I thought it was nerve damage from the fall I had when I was pregnant with my son – I hurt my left knee really badly and I had never fully recovered the feeling in it and the tingling started around that knee – it wasn’t until it spread up and down the entire leg into the left foot and then started in my right foot that I started seriously considering another look at the symptoms of MS.
So, this article has been the long way of saying that I believe strep throat and mono in the same year triggered MS in my system. And that 1994 was the year it all began for me – 20 years before my diagnosis. Wow, it’s hard to wrap my mind around that.