001 - Dx 10.07.2019
Though your dreams be tossed and blown
“How did you get diagnosed?”
This is one of the main reasons why y’all are here, right? What does it physically feel like to have MS? How do you get diagnosed with MS? The more MS stories I hear, the more I forgive the physicians who misdiagnosed me over the years. It is so difficult to diagnose MS because the disease affects everyone differently.
The first MS symptoms were extremely nuanced - my foot would fall asleep for no reason or I would randomly trip myself by catching the toe of my shoe on the ground. In 2009, I fainted in the shower which led me to have some basic bloodwork done, but nothing to warrant any further testing. My physician diagnosed me with hypoglycemia. Strike one.
Five years later (2014), I had just bought a ring and was getting ready to propose to my wife, Whitney. I had been experiencing some lower back pain that was getting worse. My left leg was painful and numb. If you have ever pinched your sciatic nerve, that is exactly what it felt like. A few days later at work, I realized something was really wrong when I experienced a neurogenic bladder for the first time. My wife, an Emergency Department RN, made me come home and we went straight to the ER to rule out cauda equina. The ER doc ordered imaging of my lumbar spine, ruled out cauda equina, and referred me to a neurosurgeon. The neurosurgeon reviewed my MRI and asked if I was going through anything particularly stressful. I was in shock. I was being accused of being psychosomatic. He stressed how he could not see anything that would be causing my numbness or urinary symptoms. He eventually ordered a nerve conduction test. When it came time for the test four months later, I was feeling great so I cancelled the appointment. Maybe this was all in my head. Little did I know, this is typical of MS, having severe symptoms followed by a period of symptomatic remission. Missed opportunity number two.
Life just went on. We bought a house and had our daughter Sloan. This may sound trite, but Sloan being born was the most lifechanging thing in the world for me. Two weeks before she was born, on Thanksgiving 2017, I weighed 325 lbs. It was the heaviest I had ever been. I had tried to lose weight and diet before, but for some reason I never stuck to it to benefit myself. Sloan had minor complications during delivery. This gave the two of us a couple hours alone in the NICU before we were allowed to reunite with Mom. My mortality hit me like a freight train in that moment. I promised her right then and there that I would do everything I could to make sure I would walk her down the aisle. I made good on my promise, I lost 105 lbs. in 18 months. My career was advancing, I was now travelling two to three weeks a month selling network infrastructure equipment. Life was going really well.
In July of 2019, I took a business trip to Washington, D.C. and NYC. Even though my back was bothering me, there was no way I was going to miss this trip. Culminating the week (after work) would be a trip to Yankee Stadium to watch Liverpool play live for the first time. By the time I landed in Spokane, I was in a ton of pain. It felt just like it did in 2014; my left leg was numb and my back was killing me. Rest and ice over the weekend made me feel a little better. I decided not to cancel my day trip to Seattle that Tuesday, which ended up being my last customer meeting. The 50 minute flight home was brutal. I couldn’t get comfortable sitting down, even in first class. We landed, I got in the car, and drove home. Getting out of the car, I came to the realization that I urinated myself and I couldn’t feel it. Off to the hospital again to rule out cauda equina, getting a lumbar MRI, seeing a neurosurgeon and having a nerve conduction test ordered. Which couldn’t even be scheduled until mid-January, three and a half months down the road. We were stuck. I was continuing to decline physically and mentally, with nothing but an appointment months down the road.
My wife saved me. Plain and simple. There is no other way to describe it. She is the most selfless, loving and giving person I have ever met; on top of that she is a fucking amazing and intelligent RN. We were talking on the phone one day while she was at work and she requested I make an appointment with my doctor. In the appointment she said something to the effect of, “look, he is continuing to decline. We have hit our max-out-of-pocket and we wont know anything from the nerve conduction study for months. I think he needs an MRI of his brain and sacrum; we should go higher and lower to see if anything has been missed.” My PCP obliged and ordered MRIs of both. That Saturday night I was in the MRI tube.
Getting the Call
Around 2pm, my daughter was napping and I got a push notification that test results were available in MyChart. Both the cranial and sacral MRIs were listed, but only the sacral MRI report was available to read. Nothing remarkable was found in or around my sacrum. I decided to call the Dr.’s office and see if they could relay the results to me. I naively thought it was some type of technical issue. The nurse was helpful and said she would be happy to look into it. I am assuming she opened and read the diagnosis in MRI report because she abruptly asked to put me on hold.
It was the longest wait of my life. I have no idea how long I was on hold for, but I became fearful when I heard my PCP’s voice on the other end of the phone rather than the nurse. In a somber and somewhat emotionless tone he said, “Your wife was right. As I am sure you have seen, the sacral MRI was unremarkable. However, the MRI of your brain showed multiple T2 hyperintense lesions which is consistent with a diagnosis of MS. I am sorry Aaron, you have Relapsing Remitting Multiple Sclerosis. I have referred you to a Neurologist and I already spoke to his office today. You’ll get a call this afternoon to schedule your appointment with him this week. Do you have any questions for me?” Obviously, I had questions. I had a million questions and thoughts running through my head. The only thing that could come out of my mouth as I held back from sobbing was, “No. I can’t think of anything.”
I sat in silence at the foot of our bed for what felt like forever. My whole life just changed. I called Whitney, who just finished a Charge Nurse meeting and she answered the phone. I blurted out “I have MS,” and immediately began sobbing. Whitney told me hold on and that she was leaving work immediately. I then began to Google. I honestly didn’t know anything about MS. The more I read about my new diagnosis, things became more clear. Women are 2-3x as likely to have MS than men, but MS in men is typically more aggressive and disabling. I quickly realized that the only man I knew who had MS was my friend Rachel’s grandfather, and he was very disabled. You only need your mind and an iPhone to quickly arrive in a dark place.
The first appointment with your neurologist, or any specialist after a diagnosis, is like drinking from a firehose. I received literature on the first-line treatments of which I was supposed to pick one, either Rebif or Copaxone. I picked the latter, which meant I now gave myself a daily injection. He showed me what my cranial MRI looked like and informed me that I had sixteen lesions in my brain, two of which were quite a bit larger than the rest. He commented that my lesions were so typical of MS, he wasn’t requiring a lumbar puncture to confirm the diagnosis (thank God). Lastly, he ordered MRIs of my cervical and thoracic spine. These revealed another thirteen lesions, for a total of twenty-nine.
I’m going to make MS my B*tch
I am the type of person that gets extremely motivated when an obstacle is placed in my path. I swam in high school and college, until continual shoulder injuries ended my swimming career. I was not super talented, but I worked hard and I was a mentality monster. My junior year of high school, I won league in the 200 free with two rotator cuff tears in my right shoulder as well as a rotator cuff tear and SLAP labral/bicep tendon tear in my left shoulder. My whole life I have been able forget about the pain and mentally push through to achieve whatever goals I had set.
Right when I got diagnosed, I took the attitude that this was something that I was going to beat into submission. I can take the pain, I can put in the work; let’s fucking go. I kept writing checks with my mind that my body couldn’t cash. You cant do that with MS. I kept trying and failing. It took my doctor telling me that my body isn’t capable of doing that anymore. The fatigue and symptoms aren’t things that you can just push through. My body will quit on me now, quickly too. I ultimately learned this lesson for the first time around Thanksgiving. This was about six weeks post diagnosis.
The prior day, I was gone driving to and from the Tri Cities for a memorial service. The next evening I was at the grocery store doing our weekly shopping. After about fifteen minutes of shopping, I looked down at the list and would start heading to the next item. A few seconds later, I would forget what I was looking for. I’d look at the list again, it kept happening. After an hour, I realized was getting nowhere. I had maybe a third of the list in my cart. I called Whitney and told her I couldn’t finish the shopping because my eyesight was funky and I felt confused. I struggled through checking out and started the walk to my car. I didn’t even get completely out of the store before I fell. I sat in the car and tried to collect myself before the 10 minute drive home.
Later that night I was diagnosed with my first MS flare post diagnosis. I had MRI imaging done which revealed a new enhancing lesion on my right optic nerve. The funk in my eyesight was a result of this lesion. This lesion caused diplopia, which unfortunately did not go away when my other symptoms subsided. After being in the hospital for over 24 hours and being treated with high-dose Solu-Medrol, I was able to go home.
Next week won’t be as depressing as this week. Have a great rest of the weekend.
What Am I Consuming
:: PODCASTS ::
The Red Scare Podcast - The Most Dangerous GME
The Fifth Column - Special Dispatch #54 Kmele’s Victory Lap (Dem Haters)
This was a Fifth Column Patreon dispatch that was unlocked for you. This is in response to Kmele Foster's appearance last week on Real Time with Bill Maher, which caused quite the uproar on Twitter.
:: MUSIC ::
Sublime's 1996 self-titled and final studio record
Jaime Webster’s album of LFC songs
Blink-182’s 2001 album: Take Off Your Pants And Jacket
:: VIDEO CONTENT ::
Real Time with Bill Maher (1/22/2021) - This is the specific clip that caused the most uproar; Real Time hasn’t uploaded this segment to YouTube and probably won’t. You can watch the full episode if you have an HBO subscription on Amazon or HBO Max.
Liverpool finally got a win for the first time in five this past week. The Reds went to the worst-named stadium in the Premier League (Tottenham Hotspur Stadium) to beat Jose Mourinho’s Spurs, three goals to two.