My MS Diagnosis Story-Part Two

NOTE:  This is the second part of my MS diagnosis story.  Please read Part One first if you haven’t already.

Continuing on my journey to an MS diagnosis, I was ready for my MRI appointment.  My initial appointment with my primary care doctor had yielded only more questions and, it seemed, only more possibilities as to what was wrong with me.  I look back at that appointment as an introduction to the uncertainty that MS creates and that my loved ones and I would become all-too-familiar with as it has become a part of our daily lives.

Totally Tubular

I don’t remember much about my first MRI.  I don’t know if it is just because it was years ago and my memory is so bad, or if it is because of the Valium they gave me to get through it.  Regardless, I was pretty stoned for the whole thing.  One thing I do remember being shocked at how long they said it would take when I arrived.  It was brain, cervical spine, and thoracic spine and the brain was both with and without contrast dye.  This would put me in that tube for a few hours.

They had told me that over the phone when I scheduled the appointment, but I really thought they were bullshitting me.  My previous experience with an MRI was a few years earlier when I was having a problem with my sciatic nerve.  It was a lumbar scan and it must have taken less than a half hour.  Obviously they were mistaken and I would reassure my girlfriend of that.  I was sure it wouldn’t be more than an hour.

Of course I was wrong.

I remember they had headphones and some music available.  I decided on classical since I had heard somewhere that it was more relaxing.  Unfortunately, I soon learned that Chopan, Mozart, or anything for that matter, doesn’t sound very relaxing with the deafening BAMP-BAMP-BAMP-BAMP of the machine in the background.  It didn’t matter though, I soon fell asleep for the entire procedure.

It would be on to the neurologist the next day.

Montel Williams MS, Right?

The big day was upon us.  I wasn’t sure what to expect, but I had expectations.  I expected that, whatever they found was wrong with me, this extremely educated and experienced specialist would have all the answers.  This specialist would tell me exactly what I needed to do, what my prognosis was, and what my treatment options were.  I expected that I would walk out of that office with some hope and, more importantly, some clarity.  After all, that was their job, right?

After seeing the nurse and getting some vitals we met the neurologist.  She was a nice enough lady and sat down at her computer to go over the MRI results with us.  As she was logging into her computer I asked eagerly, “did you find anything?”  She flatly replied, “yes.”   She was acting like I was asking her to give me a spoiler from a movie I hadn’t seen yet.  Like she was trying to reveal as little as possible without being a total dick about it.  And she was good at that.  There were no tells–a total poker face. Meanwhile that “yes” had dropped into my stomach like a cinder block.

The neurologist continued to click through the program and eventually got to my scans.  She started scrolling through a bunch of different pictures so quickly that it started to look like an animation of something moving deeper and deeper into my brain.  She abruptly stopped, as if she knew which image to stop on.  It was an image of my brain in shades of gray and black and a noticeable white spot.  My girlfriend held my arm tightly.  She would later tell me that she felt like she was going to pass out the moment she saw it.  She thought it was a tumor.

The neurologist turned the screen toward my girlfriend and I so that we could see it better and pointed to the white spot.  “This is a lesion,” she said.  “You have multiple sclerosis.”  She delivered this completely life-altering news with less empathy than my mechanic had when he told me I needed a new head gasket for my car and I might as well send it to the junkyard instead of putting another thousand dollars into it.

I was desperately looking for some indication from her of how I should feel about this, but I got nothing.  She went on to explain the rest of the scans.  She pointed out the four lesions in my brain and the three lesions on my spine, including the one that was causing my current symptoms. The neurologist said I had it for a while, but she couldn’t say exactly how long.

Without skipping a beat she told my girlfriend and I that I had relapsing remitting multiple sclerosis (RRMS).  She explained that the exacerbation that I was having would eventually go away and I would be okay for a while then I would probably have another one and it would go away, and so on.

I perked up a little.  That felt somewhat manageable.  It sounded like what I had heard that Montel Williams, the television personality, was diagnosed  with.  He appeared active and healthy.  This might not be so bad, I thought.  To confirm I asked, “so I have, like, ‘Montel Williams MS’?”

She replied, almost scolding,”no, you have ‘Mike Schlosky MS’.  MS affects everyone differently.  It’s very individual.”

Well excuse the fuck out of me!  I was just trying to wrap my head around this, was my unspoken response.

My girlfriend asked, “so he will get back to a hundred percent, right?”

“I don’t know,” the doctor replied.

“Well, what usually happens?” my girlfriend asked, not accepting her answer.

“Eighty percent”, the doctor said flatly and with no conviction.

My girlfriend looked horrified.

“I really can’t predict how this will go,” the doctor said, attempting to put the question to rest.  “The important thing right now is to treat your current symptoms and start you on a medication to prevent future exacerbations.”

She went on to explain first, the prednisone she prescribing and how my MS symptoms were a result of inflammation and the best way to treat them was using steroids.  The doctor added the caveat that since my symptoms had been going on for so long they might not help and I might have to let things run their course.  She also added some anti-anxiety medication and some medicine to help me sleep to counteract the side effects of the steroids.

Just the immediate treatment was overwhelming to me.  I couldn’t even imagine the ongoing treatment regimen.

She then explained that my insurance required that I try one of four drugs first and, if they didn’t work, I could try a more effective treatment.  Huh?  Wouldn’t you want to give patients the most effective treatment to start with? was my first thought.  Shit, what do I know? was my second thought.  She then gave us the list:

She then told my girlfriend and I that we had to decide which drug I wanted to start and went on to explain that they were all a little different and they were all injectable (I’m a total needle-phobe so none of this was helpful).  She had no opinion on any of them.  They all worked okay, according to her.  She encouraged us to take our time and look online to see which one I wanted to try.  We kept asking her for an opinion, but she gave us nothing.  The person manning the drive-thru at Taco Bell was more apt to recommend something good for lunch than this lady.   All we got was a fucking list and a follow-up appointment to teach us how to administer whatever drug we chose.

The only other thing she gave us was a flyer for a local MS 101 class for newly diagnosed people and their loved ones.  Then she said, “you’re going to be okay, Mike.”   She might as well have said, “Don’t let the door hit your ass on the way out.”  None of my expectations were met.

Starting

Even though we were a put off by the neurologist, my girlfriend and I, not knowing any better, were happy and grateful for my diagnosis.  It wasn’t cancer or ALS.  I wasn’t going to die.  It was a lifelong incurable chronic disease that was, by all accounts, manageable and it did match my initials “MS”.  I kept thinking about Montel and I felt like it would be alright.  I would be alright.  We even grabbed Starbucks to celebrate my “alrightness”.

As we sat waiting in the pharmacy to have my prescriptions filled we basked in the relief that had washed over us.  I even called my mother to give her the good news.  I found myself being positive, if not jovial.  She was understandably more than upset by the news.  I remember telling her, “I’m so sorry.” apologizing for making her so sad on my account.

Looking back, my girlfriend and I were very naïve then.  We were so unaware of what this all really meant and we had dismissed it as something less than it was.  Over the next six years we would be starting.  We would start to understand the disease and the true toll it would take.  I would start on new medications.  I would start to lose in so many ways.  We would start to look at life in a different way. We are still starting and still learning everyday.

2 thoughts on “My MS Diagnosis Story-Part Two”

  1. Hi, Friend of Katie here.
    Your account has been interesting and helpful. I am an RN (registered nurse-retired).
    I hope for the best for you. It sounds like you are in a good situation given what you said. But it can’t be easy for you. Sending positive thoughts! And hugs😘. ♡♡♡

    Sheri Lew-Kati’s long time friend.

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