My journey began in December 2023, when I first noticed a rash appearing on my face. Living in Minneapolis at the time, I visited a local dermatologist. She reassured me that it was nothing to worry about: “Sarcoidosis tends to resolve on its own.” Relieved by her confidence, I chose to follow her advice. Months passed, and rather than fading, the rash worsened. By the end of the year, I sought a second opinion. This time, the dermatologist prescribed an antibiotic and a topical cream, which seemed, at least briefly, to make a noticeable difference.
Then, in early 2025, I noticed changes to the vision of my left eye. At my routine checkup, my eye doctor discovered a small freckle at the back of my eye. Once again, I received the comforting words I preferred: “Don’t worry about it.” I admit, I tend to excel at ignoring troubling symptoms, especially if I’m told there’s no immediate cause for concern. But as the weeks went by, my vision deteriorated further, and I began experiencing dizziness when moving quickly. Intuition told me something was wrong.
Hoping for clarity, I scheduled an appointment with an ophthalmologist. March 25th was a day I had packed with plans, lunch (as I had already resigned from my role, preparing for a new adventure in New York City), followed by a handful of meetings. I slotted the appointment for the morning, thinking I could get to downtown Minneapolis by lunch and on to my full slate of afternoon meetings. I was wrong.
What I expected to be a routine visit stretched into four intense hours. While I waited in the exam room, I noticed the ophthalmologist exchanging a flurry of texts. I assumed he was making evening plans, or perhaps, I was the most boring case of the day. If only that had been true. After nearly twenty minutes, he turned to me and said, “Dennis, I’ve been consulting with my friend who is a neurologist. She can see you today. Can you head over there this afternoon?” That wasn’t really what I was expecting to hear from him, but I didn’t really think that was the type of thing you say ‘no’ to.
As I pulled into the neurologist’s office, my cell phone started buzzing. It was the ophthalmologist. “Dennis, I have an MRI waiting for you at the ER. Can you head there instead?” Instinctively, I said yes. Moments like these do not warrant hesitation. I didn’t ask what he saw, nor did I want to know. I just wanted to eat some food, we were pushing up on 4pm already and I still didn’t get to that lunch.
The emergency room in Maple Grove (about a half hour away from the ophthalmologist’s office) was a study in contradictions: a relentless sense of urgency overlaid with hours of waiting. After three hours of waiting, thinking that I’m the healthiest person in this place, I finally got called in. Then I spent another hour and a half in the machine. The ER doctor, warm and upbeat when I met him joked with me about my day and how he hoped I’d be out of there soon. He was awesome, but not a neurologist, so he had to send my MRI to the Level 1 trauma center in Minneapolis, which had neurologists on staff all night. It was well past 10pm by then. My funny and jovial ER doctor dissolved when he returned to my room. His voice was earnest and solemn as he explained that abnormalities appeared on the scan with significant swelling in my brain and a compromised blood-brain barrier. He told me he had to perform a lumbar puncture and then would arrange an ambulance transfer. My day was really going off the rails at this point (well, really my night was since it was darn late), I wasn’t going home, I wasn’t getting a Jersey Mike’s sandwich and for the first time that day (and in this saga), I realized I might not see next Christmas. The ER doctor was concerned, visibly, as stroke or seizure became a real risk and time was critical. That sharp-eyed ophthalmologist quite likely saved my life.
I got transferred to the neurology unit after 1am, I finally got to sleep for a few minutes (still a little hungry but that didn’t seem so important any more). The next morning, a team of neurologists gathered. They presented three potential scenarios: an infection, an unusual “other,” or most likely, CNS (central nervous system) lymphoma. More scans followed, which revealed ‘innumerable granulomas’ on my lungs. So many these people couldn’t count them all. The neurologists prepared me for the possibility that I might only have “one more Christmas.” That wasn’t reassuring, but they were determined to get to the bottom of it and figure out what to do.
As they asked about my medical history. At the mention of sarcoidosis, one doctor’s eyes lit up. Suddenly, a different possibility emerged. Sarcoidosis often mimics lymphoma, and perhaps that’s what was happening. The granulomas had invaded my lungs, my heart and of course my brain.
I began high-dose steroids, and, remarkably, my vision started to improve that same day. After a week, I went home on a prednisone taper. I was hopeful, but the optimism didn’t last as my symptoms rebounded rapidly. Within a week, my left hand and leg began trembling. I lost strength entirely; simple tasks like lifting a glass of water became impossible. I was frightened, and so were my doctors. The MRIs showed no improvement on the swelling in my brain. My care team seemed close to despair one even told me, “Live every day like it’s your last, so you have no regrets.” That made me cry for a while, but it also made me resourceful.
In my lowest moment, I remembered a dear friend, someone who ran a major healthcare fund, who had always urged me to reach out in times like these. I had always conceded I would never ask (I’m not really the type of person that asks for help) but this time, I did.
My friend responded instantly. Within half an hour, he provided the names and numbers of the world’s top three sarcoidosis experts which were all based in New York City, coincidentally my soon-to-be new home. His team made the necessary calls for me. One doctor from Weill Cornell/NY Presbyterian agreed to a phone consult, Dr. Dinkin. His words were transformative and the first time I had real hope: “Dennis, you’re not going to die from this. Here are three medications you need to get on, bring them to your neurologist, get on them today, and see me in my office on Monday. If anything happens before then, come directly to our ER. You’re in our system now.” For the first time, a doctor told me I was going to be okay, and he was very believable.
The relief on my neurologist’s face in Minneapolis was palpable when I told him. Expert help was on the way.
Arriving at Weill Cornell, everything changed for the better. From the start, Dr. Dinkin took the time to understand my case and had seen it before. While neurosarcoidosis isn’t a daily occurrence for him, it isn’t that rare for him either and he had the right playbook. He said I needed a team, and that’s exactly what he built around me: ophthalmology, neurology (Dr. Kohli), rheumatology (Dr. Berman), pulmonology (Dr. Kanner). They crafted a plan tailored to my complex needs. High-dose steroid infusions, a fast-tracked approval for remicade, and a seamless continuum of care followed. Dr. Kohli and Dr. Berman became the quarterbacks, checking in on me almost daily at first and really spending the time and care with me to get me through the worst of the symptoms. For the first time, I could sense real progress: my strength returned, tremors diminished, and hope bloomed again. This team, with their experience and compassion, gave me my life back and allowed me to start my new job. What shocked me the most though, was the follow up. Each of my new doctors reached out to me to check-in periodically to see how I was progressing, if I needed anything, etc. When I started feeling low, they brought me right in for infusions, that day! It was an extreme turnaround in my health and my life and I couldn’t ever be more grateful.
Weill Cornell’s coordinated excellence is really unmatched. Every aspect of care from attentive doctors to an exceptionally run infusion center was worlds apart from what I experienced anywhere else in life. Everything I needed, from MRIs to specialized treatments, was available within a few floors. The difference in care between my former hospital and New York City’s finest is staggering. I am endlessly grateful to everyone at Weill Cornell who contributed to my recovery. Every time I receive an infusion, I am reminded of how fortunate I am. My most recent MRI (at the end of August) showed real progress for the first time since March, most of the swelling has disappeared in my brain and I am back to mostly normal (at least for me!) Also, the most recent visual field test shows a -13.7 on my left eye. While not perfect yet, and maybe never fully recovers, when that sharp-eyed ophthalmologist in Minneapolis first sent me to the ER, I was a -25 on the visual field and then the first one Dr. Dinkin did in New York City was a -17.9. So, I keep improving!
I really can’t say enough great things about the team at Weill Cornell and HSS, where Dr. Kohli spends so much time making sure I am improving and really understands the progress. Dr. Berman has written so many letters to the insurance company to get me on the right medication (which is off label) and I know that the whole team is always in my corner. I couldn’t be happier with the outcome and will always be so thankful!