5 years and counting

Hi.
I'm Nick.
I'm 26 years old.

 I live in Maine

 

 

 

 

I play Piano.

 

I'm a Stand Up Comedian

When I was 21 years old,
I was diagnosed with Multiple Sclerosis.

I have been reading a lot of posts and magazines put out by MS support groups such as the National MS Society and PatientsLikeMe.com and I have decided to start writing a blog to share my personal experiences with the disease with the world.

I am doing this for two reasons. First - as I'm going through all of these experiences, I find it difficult to communicate regularly with people who share similar experiences with me. Finding someone else who has Multiple Sclerosis is hard enough; finding someone within that group who is in their 20's/30's is nearly impossible. I've decided that if I'm not finding people to talk to, other people probably aren't either.

Second - I can't remember anything and this will be a good way to track how I'm feeling on different days.

While writing this blog I hope to entertain and inform my readers about both my life and my disease.

Let's start with the basics - 

MY DIAGNOSIS

I was diagnosed with MS on April 16, 2007. Coincidentally, the same day as the infamous Virginia Tech Massacre. I know this because I was watching it unravel on CNN in the waiting room of my Neurologist's office whilst awaiting the results of my MRI and Spinal Tap.

 

Getting diagnosed was one of the most difficult things I have ever gone through. Now, I don't mean that receiving the news was emotionally devastating and made me want to curl up in to a dark corner and cry by myself for the weekend. No - I actually mean the process was more difficult than a job application for Google.

I awoke on the morning of Monday, April 2nd with a slight tingling in both of my feet. This was nothing unusual. Who doesn't wake up with some random part of their body feeling like it was being tattooed by a million tiny needles, right? As if I really wanted my feet permanently tattooed purple just to save myself the hassle of folding socks for the rest of my life.

I went to work and carried on about my day as usual but as lunch hour approached, the numbness was not subsiding. At this point, I began to wonder what could be causing the issue. The most logical reason - a pinched blood vessel restricting the oxygen to my feet and, thus, causing the "pins-and-needles" feeling with which anyone who's ever fallen asleep on their hand is quite familiar.

By lunch time, the tingling had moved its way toward my knees.  At this point, I started to get a little more concerned so I asked my boss if I could leave early and head over to the Emergency Room at Maine Medical Center. Luckily, he seemed to think the idea had merit and gave me the afternoon off.

After explaining my situation to the receptionist in the ER, she kindly told me to sit in the Waiting Room. Two hours later, I was seen. I explained my situation to the Doctor. He kept asking me if I was on any medications or used any recreational drugs.I kept saying "no" and continuing on with my story. After a brief visit, the Doctor concluded that I had bruised a nerve and it was causing the tingling in my feet. I am not a medical professional but this answer did not satisfy me. I asked the Doctor how that would affect both of my legs from the knees down and not just one specific location. He threw a bunch of medical jargon around hoping to confuse me enough to stop asking questions. He was successful.

By the time I got home that evening, the numbness has moved its way up to my thighs. This concerned me because it was getting dangerously close to the area that Jerry Sandusky used to call "Nick's Special Place."

I woke up Tuesday morning and the situation was progressing. By this time, the numbness had moved up to my belly button. In case you were wondering (and I know you are) my hunka hunka burnin' love seemed to be the only part of my body not being affected by the numbness. Score. I called out of work and returned for a second visit to the ER. After again explaining my story to the receptionist, waiting another 2 hours in the penalty box, and then retelling my story to another Doctor, I was again accused of being a drug user and dismissed from the hospital. I decided that, since I wasn't getting any answers and since my hands were still fully functional, I would finish out the second half of my day and grab a couple two-tree dollars at work. 

That evening I performed a comedy gig at a bar in Gorham, Maine. During my performance, the numbness moved its way down my arms and in to my hands. At that point, in traditional Chris Rock style, I dropped the microphone on the stage and walked off. The audience loved it and I was able to leave with my dignity intact. What the audience didn't realize is - that wasn't part of the show. When I lost feeling in my hands, I couldn't tell how hard I was holding the Mic and I dropped it.

I drove immediately back to the ER and was much more intense with my story. My best friend Mike, my Dad, and his Wife met me at the ER at 9:00 that night. I finally saw a Doctor at midnight. After actually listening to what I had to say and doing a series of tests on me, she looked at me with a very stern and serious tone and said "You need to see a neurologist."

At this point, the details of me memories become hazy. Over the next few weeks I got an MRI and a Spinal Tap. For those of you who are unfamiliar with those procedures, I'll try my best to explain them to you. 

I don't know how an MRI works, but I'm pretty sure it has something to do with measuring the amount of stress put on your brain by strapping you to a table, shoving you in to an incredibly tight space, telling you not to move, and firing assault riffles next to your head.

A spinal tap is pretty much exactly how it sounds.They take a needle, puncture your spinal chord, and drain the fluid out. Just like making maple syrup!

 

The reason for the spinal tap is to rule out other similar neurological viruses like Lime Disease and Lupus - Both of which can show similar symptoms to MS, but will show up in your spinal fluid. If you test negative for both of those, you've got MS.

So that's my Diagnosis.

Since then I've been on a variety of treatments including Rebif injections, Copaxone injections, and monthly steroid infusions. I lived symptom free until Christmas, 2011. Almost 5 years without a relapse. I'm currently mostly symptom free (except for having almost no feeling in my left thumb) and am taking Copaxone injections daily... well MOSTLY daily... nobody's perfect, right?

Stay tuned for more fun.

Nick