In the summer of 2022, I had just turned 31 years old and was on the verge of finishing up my PhD at the University of Illinois at Urbana-Champaign. I had been in school a long time, like a really long time, and at that point it was harder to say who was more excited that it was nearly over, me or my wife (thanks for sticking it out with me honey!). I can’t quite remember the exact date, but what I do remember is that I was driving into the lab where I worked one morning, when I noticed my left arm had reduced sensation to the touch. I honestly didn’t think anything of it at the time, but over the next several days, I would lose all feeling in my left arm and hand.
My MS Story
by Adam Nelczyk
Having been a competitive ice hockey player from ages 5-22, I had racked up a few back and neck injuries, and assumed that a disc was likely impinging a nerve in my neck, which was cutting off the sensation to my arm. It was obvious, that had to be it, it was the only thing that would make any sense. I let my wife Kim, who is a Physician Assistant in the emergency department, know about my symptoms to get her opinion on what she thought I should do. I can not stress enough how cool and composed of a person Kim is, literally nothing phases her because she has seen it all. So, you can imagine my surprise that when I explained that I specifically had no feeling in the palm of my hand, her demeanor quickly shifted, and she insisted I see my primary care provider as soon as possible.
Frankly, I thought she was over-reacting, but thankfully I deferred to her better, more educated judgement, and went to get checked out. July 27th, 2022 is a date that I definitely can’t forget. I was at lab when I received a phone call from my doctor, which I immediately thought was strange because I primarily would see and communicate with his nurse practitioner. The phone call started off as expected, in that the X-rays and MRIs confirmed bone and disc degeneration in my neck. However, he went on to explain that there were “several bright spots” in my neck that were concerning for multiple sclerosis (MS). I’m not sure if it was shock or just a strong desire to reject the possibility that I had a serious neuromuscular disease, but I politely listened to my doctor’s thoughts and agreed I would do follow-up imaging and tests at some point. When I got home that night and went over the radiologist notes with my cool, calm and collected wife who never panics about anything, she looked at me and said “Adam, this is really concerning”. It was at that moment that the reality of the situation hit with full force.
Over the next several months, I would develop more worrying symptoms. Burning sensations in my head and mouth, stabbing in my ears, lack of coordination, and feelings of dissociation from my legs while walking. After getting a full workup and seeing multiple neurological experts, we confirmed beyond a doubt that I had MS. Being a researcher, the only thing I could think to do in this situation was to learn everything I could about MS; the disease pathology, short and long-term outlooks, and the various treatment options. Not only did this give me a sense of control during a time of feeling helpless, it also allowed me to have meaningful conversations with my medical team about treatment options and lifestyle choices that could maximize my quality of life moving forward.
One of my biggest fears when I was first diagnosed, was how MS would affect my ability to be physically active. I’m a big fan of running, going on walks with my dog, doing CrossFit, and getting on the ice with my wife (who is also a hockey player). The anxiety over whether I would have to give these things up was one of my lowest points during this journey. Thankfully, to my great relief, my neurologist actually encouraged me to stay physically active and to focus on eating a healthy diet as ways beyond therapeutic treatment to stave off accrual of physical impairments.
Fast forward to 2024 and I am proud to say, I have completed a sprint triathlon, a marathon relay, multiple CrossFit competitions (with plans to do more), and recently hiked to the highest point in Thailand. Does this mean everything has gone smoothly since my diagnosis? Heck no! I still deal with the same symptoms many individuals with MS experience; discoordination, proprioceptive issues, unusual or painful sensations in the extremities, twitching, and fatigue. Luckily, I am beyond fortunate to have amazing friends and family that have helped me find my resilience and continue to encourage me to chase after my goals. We all face obstacles in life, and while MS is a big one for me, I refuse to let it determine what I get to do and how I get to live my life.
As a cancer researcher by training, I am keenly aware of how impactful patient advocacy can be when it comes to educating the public, promoting healthcare reform, and raising funds for research. I am beyond excited to be an ambassador for MS4MS, and my hope is that my story, as well as my actions as a patient advocate, can play a meaningful role in the fight to end MS!
In the summer of 2022, I had just turned 31 years old and was on the verge of finishing up my PhD at the University of Illinois at Urbana-Champaign. I had been in school a long time, like a really long time, and at that point it was harder to say who was more excited that it was nearly over, me or my wife (thanks for sticking it out with me honey!). I can’t quite remember the exact date, but what I do remember is that I was driving into the lab where I worked one morning, when I noticed my left arm had reduced sensation to the touch. I honestly didn’t think anything of it at the time, but over the next several days, I would lose all feeling in my left arm and hand.
Having been a competitive ice hockey player from ages 5-22, I had racked up a few back and neck injuries, and assumed that a disc was likely impinging a nerve in my neck, which was cutting off the sensation to my arm. It was obvious, that had to be it, it was the only thing that would make any sense. I let my wife Kim, who is a Physician Assistant in the emergency department, know about my symptoms to get her opinion on what she thought I should do. I can not stress enough how cool and composed of a person Kim is, literally nothing phases her because she has seen it all. So, you can imagine my surprise that when I explained that I specifically had no feeling in the palm of my hand, her demeanor quickly shifted, and she insisted I see my primary care provider as soon as possible.
Frankly, I thought she was over-reacting, but thankfully I deferred to her better, more educated judgement, and went to get checked out. July 27th, 2022 is a date that I definitely can’t forget. I was at lab when I received a phone call from my doctor, which I immediately thought was strange because I primarily would see and communicate with his nurse practitioner. The phone call started off as expected, in that the X-rays and MRIs confirmed bone and disc degeneration in my neck. However, he went on to explain that there were “several bright spots” in my neck that were concerning for multiple sclerosis (MS). I’m not sure if it was shock or just a strong desire to reject the possibility that I had a serious neuromuscular disease, but I politely listened to my doctor’s thoughts and agreed I would do follow-up imaging and tests at some point. When I got home that night and went over the radiologist notes with my cool, calm and collected wife who never panics about anything, she looked at me and said “Adam, this is really concerning”. It was at that moment that the reality of the situation hit with full force.
Over the next several months, I would develop more worrying symptoms. Burning sensations in my head and mouth, stabbing in my ears, lack of coordination, and feelings of dissociation from my legs while walking. After getting a full workup and seeing multiple neurological experts, we confirmed beyond a doubt that I had MS. Being a researcher, the only thing I could think to do in this situation was to learn everything I could about MS; the disease pathology, short and long-term outlooks, and the various treatment options. Not only did this give me a sense of control during a time of feeling helpless, it also allowed me to have meaningful conversations with my medical team about treatment options and lifestyle choices that could maximize my quality of life moving forward.
One of my biggest fears when I was first diagnosed, was how MS would affect my ability to be physically active. I’m a big fan of running, going on walks with my dog, doing CrossFit, and getting on the ice with my wife (who is also a hockey player). The anxiety over whether I would have to give these things up was one of my lowest points during this journey. Thankfully, to my great relief, my neurologist actually encouraged me to stay physically active and to focus on eating a healthy diet as ways beyond therapeutic treatment to stave off accrual of physical impairments.
Fast forward to 2024 and I am proud to say, I have completed a sprint triathlon, a marathon relay, multiple CrossFit competitions (with plans to do more), and recently hiked to the highest point in Thailand. Does this mean everything has gone smoothly since my diagnosis? Heck no! I still deal with the same symptoms many individuals with MS experience; discoordination, proprioceptive issues, unusual or painful sensations in the extremities, twitching, and fatigue. Luckily, I am beyond fortunate to have amazing friends and family that have helped me find my resilience and continue to encourage me to chase after my goals. We all face obstacles in life, and while MS is a big one for me, I refuse to let it determine what I get to do and how I get to live my life.
As a cancer researcher by training, I am keenly aware of how impactful patient advocacy can be when it comes to educating the public, promoting healthcare reform, and raising funds for research. I am beyond excited to be an ambassador for MS4MS, and my hope is that my story, as well as my actions as a patient advocate, can play a meaningful role in the fight to end MS!
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