But….But….You Said….It’s Not MS


So……now I have gone around telling friends and loved ones, well at least the closest friends that knew there was some problem, that it was not MS! We just needed to do a few other tests to find out exactly what it actually was. But, Fuck Yeah! It’s not MS! None of the other tests showed signs pointing to MS. Once again, Fuck Yeah! Not MS. We were pretty sure of that.

It’s Saturday night. I’m on my last shift at the bar before Monday. Monday is the day I go in for the dreaded spinal tap. My boss, who has a wonderfully warped sense of humor similar to mine, loops a showing of ‘This Is Spinal Tap’ throughout the entire shift on the bar T.V. that evening. Fitting. Funny. Bitingly humorous! Highly appreciated by me. My workplace had been great throughout the entire experience, and this was a perfect example of how they let me know how much they cared. It was awesome!

Monday morning arrives. I try to act calm. As if it’s just a simple process that I have no worries about. My wife knows me better than that. She knows just how freaked the fuck out I am. She was as well.

We drive to the medical center in the morning rain. Not a lot was said in the car on the way. At least, I don’t remember a lot being said. Jen may have quoted as much of the Iliad as the twenty minute drive would allow, for all I knew. I wouldn’t have noticed. My mind was on the fact that someone was about to stick a needle smack dab into my spinal cord in mere minutes. Nothing else was entering my mind. It’s kind of difficult to think about anything else when a procedure like that is hovering on the horizon. I kept thinking about my drummer friend saying his goodbyes to his loved ones. I said goodbye to no one. I hate goodbyes. They make me uncomfortable. Plus, I kept reminding myself goodbyes weren’t needed in this situation. It was just a simple, out patient procedure. I would be back at home, on the couch recovering in just a few hours.

I have to admit, at this point, I don’t remember much of the next bit of time that passed. Checking in, prepping for the procedure, and heading into the operating room are a fuzzy blur. About the only thing I do remember is that, on paper, and while checking in, they didn’t call it a spinal tap. They referred to it as a ‘Lumbar Puncture’. That sounded even worse to me. I mean, which would you rather have someone tell you? “I’m going to give you a tap.”, or “I’m going to give you a puncture,”?  Tap right? Yeah, that’s what I thought.

The next thing that I remember clearly is lying face down on a table, hospital smock revealing my upper buttocks, telling the strangers in the room that I was warm enough when they asked. I actually don’t recall if I was, but I remember saying I was.

The most mature presence in the room ended up being the specialist leading the procedure, much to my……..there goes the loss of word……..RELIEF! (Jesus Christ, I couldn’t come up with the word relief! I can’t explain how frustrating that is.) To help explain the situation that occurred next, I feel I have to explain something. When I am nervous, or out of my element, I’ll often say yes to anything I am asked. In this case, I was asked by the man in charge if I would like to watch the procedure live on a real-time screen that they could maneuver into my view while I lie face down on the table. I…………..said………….yes………..! Why? I explained that a moment ago. I’ll give you a moment to go back and recap. It’s just a few lines back.

Okay. Now that you have re-read why I said yes, I’m now going to explain what the experience was like. Misery loves company.

First of all, keeping the fear at bay, was knowing Jen was waiting not far from where I was. She would be there when the procedure was finished. I concentrated on that.

The assistant informed me of the general anesthetic that would be causing a slight pinch in my lower back. Once again, I said, “Okay.” By no means did it feel good, but it wasn’t horrible.

After a waiting period for the anesthetic to kick in, I was told I would feel some pressure as the needle was inserted into my spinal cord. Some one needs to explain what ‘some pressure’ means to most people. This was a lot…..and I mean A LOT of pressure. As I watched on the x-ray screen in my view lying in my prone position (yes, I’m an idiot for watching), it felt like someone had  just placed a softball in my lower back, just above my buttocks. (No butt jokes, please. Okay, maybe a few. I think the situation deserves it. Come up with whatever you think of.) On the screen, I watched a long, thin needle slide into place straight into my spinal cord. Talk about surreal! Yes, it was very uncomfortable! Not the horror story I had heard about from my drummer, whom I mentioned in the last post, but definitely not something to do if you have an afternoon off with nothing else going on over a slow weekend. Go see a movie, or hang out with friends who don’t stick needles in your spine. I would even suggest doing lawn work, which I hate. I just want that to be clear.

To make it less uncomfortable entering the spine, the needle is very thin. Unfortunately, this means it has to stay in place for about thirty minutes to get the amount of fluid that they needed to run the tests. That seems like forever when a foreign object is nesting in one’s spine, and the only entertainment being shown is the live feed of said needle slowly extracting spinal fluid from one’s body. Simply a slow drip, drip, drip. It’s like the worst in flight movie you’ve ever watched, with no plot, no big stars, and no nudity. BORING AND UNCOMFORTABLE! Afterward, the surgeon showed me the vial of fluid. It simply looked like a tasty shot of white liquor. A vodka or gin. But trust me, you wouldn’t want to drink it. I thought of cracking a joke by asking if I could try a taste, but I figured the situation was odd enough on it’s own. I decided against asking. Probably wise.

Understandably, I was in a bit of a daze afterward. They gently put me on a stretcher, and wheeled me into an observation room where Jen waited for me. God, I was happy to have her there with me. The staff informed me to just relax and report any unusual pain. I was guessing ‘unusual’ meant anything besides the feeling of a softball nesting in my lower back. We sat there for what I think was two hours to make sure there were no complications before I was told I could be wheeled out to the car in a wheelchair and headed home. We were told to keep an eye out for any clear leakage, which could mean that the spine could still be leaking spinal fluid. (YIKES) Luckily, no further leakage occurred. I was sore for about a day and a half, lying on the sofa watching T.V. Outside of the headache that I had (I was told to possibly expect one), that wasn’t too bad. At this point, it was just a waiting game for the phone call from a nurse, whom I expected would have good news. All of the other test results came from a nurse on the other end of the line when results came in, and I expected no different this time.

It was a long week waiting for the call from the  nurse. I tried not to think about it, but I’m a…….crap……can’t think of the word…….PERPETUAL worrier. (Perpetual! Got it!) Finally, I think it was on the following Monday, the phone rang. I looked at the phone’s screen to see it was the neurologist office calling. Here we go!

As soon as I heard the neurologist’s voice (I immediately knew, due to her heavy accent.) on the other end of the line instead of the nurse, my heart sank. I knew what she was about to tell me before she said it. She had made the call herself. It was not going to be good news.

“Mr. Downs?” Her voice was somber.

“Yes, this is David.” I’m sure there was an obvious shaking in my voice.

“I’m sorry to say that we did find the marker indicating MS in your spinal fluid.”

A few moments of crickets. The sound of my thoughts trying to comprehend what was just uttered. Then I simply asked, “Okay…what’s next?”

“When can you come in to discuss how to approach the situation from here?”

I know more was said in this conversation, but I would never be able to tell you what. My mind wasn’t retaining a damn thing at the time.

We set  an appointment, which I immediately wrote down, knowing I would probably forget as soon as I hung up the phone. Then I just sat there, and sat there, and sat there for I don’t know how long trying to figure out whether I should call Jen at work, or wait for her to get home. I decided to call.

I have to admit, I was fighting back tears telling her the news. We had put MS out of the equation, and suddenly, it was right smack dab back on the table as the centerpiece. What the fuck were we in store for? How was I going to tell my family? What was I going to tell my friends? Do I tell my employer? Was I going to lose my sight? Was I going to have to start shopping for a wheelchair? So many questions running through my head in a matter of  seconds. We had no idea what was in store. Truly, a frightening feeling.

On our next visit to the neurologist, we discussed treatments. To my relief, ‘Gong’ suggested a pill. Aubagio. A relatively new treatment approved by the FDA in 2012. One pill a day. I had researched MS online, and was scared to death that I was going to have to give myself injections. I…..did…..not……want……that! The pill could have side effects, but I wouldn’t have to stick a needle into myself. Some good news. (It’s amazing how one’s perspective of ‘good news’ can change!)

Another MRI was suggested  as well. This time, concentrating on my spinal cord near the base of my neck. Due to some of my symptoms, the idea was we might find evidence there. We hadn’t looked there, up to this point, since lesions usually show up in the brain first, I was told. We schedule the MRI, and low and behold, the results show the lesion that confirmed my situation.

At this point, there was actually a feeling relief, on my end. At least now I knew what I was fighting. MS was attacking, and we had something to focus on. That may seem weird, but it was progress. For four months I didn’t know what the hell I was dealing with. Now, at least, I did.

Well, as I promised, I did finally  get to diagnosis…..for now. There was one more small hiccup later, but I’ll save that for further into the story. Finally, we could move forward, out of limbo. We would start treatment, and in six months have a follow up MRI to check on the progress.

We’ll get into that next time. We’ll also get into the symptoms that I finally had an answer to why they were occurring. Fun stuff! Hope to see you, out of one good eye at least, next Tuesday!

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2 thoughts on “But….But….You Said….It’s Not MS

  1. Love you man. That hurt to say….Now I need counseling to combat the psychological effects of saying I love you. Seriously though, proud of you for going at it the way you are.

    Liked by 1 person

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