The first step in my journey to an MS diagnosis was on a hot day in July of 2010. By all measures my life was on the cusp of becoming absolutely fantastic. My youngest daughter had just been born a month earlier. I was dating the woman who would become my wife a few years later. After almost a year of being unemployed, I had finally found steady work. I was moving into a new apartment. Things were looking up. Things were moving forward. I was bursting with optimism about the future.
I felt like I was finally on a roll and nothing could stop me short of death or some horrible disease. Now, I know this is starting to sound like some clever foreshadowing in a movie or something–giving the audience a sense of tranquility before shit gets real, but, dramatic effect aside, this is really how it all started.
A Catch In My Get-Along
I was moving into my new apartment. It was on the second floor. No elevator and a lot of stairs. I was going up and down the stairs in my usual spry way. Up to that time I had spent most of my adult life carrying heavy things to wherever they needed to go. I was in the delivery business. First, delivering 160 lb. oxygen tanks for various home healthcare companies, then, my current job delivering water treatment chemicals which, more times than not, were 55 gallon drums weighing in excess of 500 lbs. I’m not trying to say that I was a tough guy or anything, just trying to show that the task of carrying things repeatedly up or down stairs was nothing out of the ordinary for me.
Throughout the day I remember noticing a funny feeling in my right knee. I imagined it was the same kind of feeling that Grandpa got when the weather was changing. “Got a little catch in my get-along–must be a storm a’comin’…” It felt like nothing I had ever felt before. A kink or maybe a spasm of some kind? My knee felt like it was separating at the joint. It was wobbly. It didn’t hurt. In fact, it was a little numb if anything. This feeling came and went for no apparent reason. I remember thinking, as this went on for weeks, maybe there is something wrong.
Now, for a lot of people, including my girlfriend, this would have prompted a visit to the doctor, but seeing a doctor was the furthest thing from my mind at the time for a couple of reasons:
First and foremost, I didn’t have health insurance. This was pre-Affordable Care Act. I had started the new job only a few months earlier and would not get my health insurance until I had been there for six months. Anything that was going on with me could surely wait until I got signed up.
Second, I wasn’t exactly a “go to the doctor” type of guy at that time in my life. I was a healthy thirty-six-year-old man who, despite smoking a pack a day and subsisting on Egg McMuffins and Double Quarterpounders for most of my life, had no serious health issues. I rarely got sick and, even when I did, I tended not to skip a beat.
Third, I hadn’t yet gained an understanding of my mortality. I really thought that I was a genetic badass, an exception to the rule, and I would keep on living no matter what I did to myself. After all, disease, disability, and illness were things that happened to other people.
So I kept on going about my life as usual, promising my girlfriend that, as soon as I got my health insurance, if this was still an issue, I would see a doctor. It went on for weeks. I kept hoping it would get better, but it only got worse. Soon my feet were numb. Not pins and needles numb, not “your arm fell asleep while trapped under your dog” numb, but fucking numb! The kind of numb where you can’t figure out if you are standing on solid ground or even where the ground is.
I was walking like I had just beat Tyrion Lannister at a drinking game. I fell off the lift gate of my truck at work more than once. And again the thought came to me, maybe there is something wrong.
A Finger Up My Ass and Some Laughs
Fulfilling my promise to my girlfriend, I scheduled an appointment with a doctor as soon as I enrolled in my health insurance plan. By then the numbness had slowly crept up my body. I was now numb from my nipples down (why did it end at the nipples? Weird, huh?) My hands and arms were numb from the shoulders down as well.
My girlfriend accompanied me to my appointment. I remember feeling weird that she was there. I don’t think I had been to a doctor’s appointment accompanied by another person since I was in middle school. But, I did attend all of her pre-natal appointments and I was there for the birth of our daughter so maybe this wasn’t so weird after all.
Worried, my girlfriend was looking for any answers that would give her some comfort and reassurance that I was okay. According to my earlier consultations with Dr. Google, my symptoms were indicative of anything from a pinched nerve to cancer. So, understandably, I was going back and forth emotionally between, “what’s all the fuss about?” and “how many weeks do I have left?”
We met my new doctor. After I told her about my symptoms, she performed a routine examination and then moved on to what is now the all-too-familiar basic neurological exam. Not knowing what this was or how important it was I remember, as she was testing the strength in my legs and arms, I was thinking to myself, I could totally pick you up and throw you–is this really necessary?
After a few more questions and ordering some blood work the doctor seemed as if she were done, but then turned around and, as if she were Columbo saying, “Just one more thing…”, and quite matter-of-factly mentioned that she would do a proctological exam real quick. She didn’t say exactly why and I, not wanting to pour gasoline on an already embarrassing situation, didn’t ask. She was all business, as I’m sure one has to be when you are getting ready to enter the anus of a person with whom you aren’t romantically involved with, and the fact that my girlfriend was sitting in the room with us, face-palming and looking like she was going to puke, didn’t seem to concern her.
As the doctor was getting out gloves and lube I tried to remember if I had shit that day. Once I confirmed with myself that I hadn’t I felt a little better about the whole thing, dropped my pants as my girlfriend looked away, avoiding the unpleasant visual. The whole thing was very surreal and, as the doctor started, I had to hold back my sudden laughter at the absurdity of the entire situation. Thirteen-year-old Mike had gotten the best of me as the little shit often does. My girlfriend heard me and she held back her giggles as well.
After all that, the doctor seemed very concerned, but she was adamant that it could be so many different things that she wouldn’t even venture a guess without some test results. This was a real bummer because I thought that taking a finger up my ass was worth at least a guess.
The doctor told us that she would schedule a STAT MRI. Now, I watched enough ER in the 90’s to know that “STAT” meant right away, but appearantly it meant “about two weeks or so” in the primary care world. I would hate to see the time frame on a “non-STAT” MRI. In hindsight, I think the doctor was probably just as frustrated as we were about the wait.
She also scheduled me for an appointment with a neurologist the day after the MRI to go over the results. A specialist? So soon? Something must be seriously wrong, I remember thinking.
Godot an MRI
As we sat in the waiting room to get my blood drawn we stared at slow-loading Google results on our phones. We didn’t get the definitive diagnosis from my exam and we were intent to get a diagnosis, even if it was from Dr. Google. Our small data plan and the shitty public wi-fi at the doctor’s office slowed the process as we painfully scrolled through pages and pages of websites, squinting at our tiny Blackberry screens.
Frustrated with how slow everything was going, I decided to kill some time and call my mother and let her know what was going on. I hadn’t told my parents about anything that was happening to me. After I talked to her I was reminded why I didn’t call her sooner. The conversation went something like this:
Me: Hi Mom. I went to the doctor today because I’m numb from the chest down. They think it might be something serious. I’m going to get an MRI and I have to see a neurologist. I’m worried.
Mom: Oh, I’m sure it’s nothing. Probably just a pinched nerve or something. You should see a chiropractor. I can give you the number of mine. If you got an adjustment–
Me: Okay, Mom. Thanks. I’ll think about it. I gotta go. They are calling me up to get blood drawn. Bye.
Mom: Okay, hope you feel better. Bye.
At 43 years old I still haven’t figured out my mother. She is either an eternal optimist or bent on minimizing anything that I am feeling–I don’t know which. Whatever the case, her nonchalant reaction planted that seed of self-doubt that I was so familiar with and, to this day, still struggle with. I remember sitting in the waiting room and asking myself, is there really anything wrong with me? Is this all in my head?
I wanted nothing more than to go back to work and pretend this all never happened, but I looked over at my girlfriend, her face consumed with worry and dread and I decided then that I would see this through and make sure that both her and I knew that I would be okay.
Looking back, the wait for an MRI was the longest and hardest part of the whole thing. In that time, my girlfriend and I spent a lot of time looking up possible diseases and conditions and mentally and emotionally ranking them on our “devastation scale”. ALS got a “10”, a tumor got an “8”, a bulging disc was a “2”. Our heads kept spinning with the possibilities and we started to spiral out of control with our speculations. I quickly realized that I was getting nowhere trying to guess what was wrong with me and the only thing to do was to wait.
My next post will be the rest of my diagnosis story. In the meantime, please share your diagnosis experience in the comments.