Numbness & Pain: My Journey with Neurosarcoidosis…So Far

My wife stabbed me in the butt with a knife. 

Stabbed might be an exaggeration. It was more of a poke. No blood. I didn’t feel it because much of the right side of my body is numb. 

There’s a new movie out called Novocaine in which the protagonist can’t feel pain. That’s pretty much me from the tips of my right toes to my armpit. Although Numb Right Side Man isn’t a very good movie title or much of a superpower. 

What’s not an exaggeration is that as my numbness spread, and spinal cancer was on the table, I thought I was going to die. I told my wife, Annie, where to find all of my login info for our finances and who to call to collect life insurance. That was not fun. 

Ultimately, after a risky biopsy of my spinal cord, I was diagnosed with a rare auto-immune disease called neurosarcoidosis. Basically my body is an asshole and decided to start killing cells and piling them up in my spinal cord. This first presented as slight numbness and pain in my right armpit that spread down my arm into my right pinky and ring fingers. And then the pain began. 

Water from the shower hurt my chest. Lightning bolts of pain shot from my spine to the back of my right shoulder. With each blast I jumped. You know how you can tell how close a storm is from the time you see the lightning until you hear the rumble? The lightning in my back that shook my whole body started happening every minute. The storm was close, and I was miserable. That’s when I got desperate and begged a doctor at the Cleveland Clinic to take me in. 

By that time, over the course of a few months, I had had multiple MRI’s, a PET scan, and a spinal tap.

The doctor agreed to see me. I spent a week in the Cleveland Clinic where they tested me for everything. 

“You’ve traveled a lot,” an infectious disease doctor said, “have you ever been swimming in Lake Malawi?” 

“Tell me more about these sheep,” one doctor asked to which I told him, “If the sheep caused this, we can’t tell my wife because she’ll kill me.” (The sheep were a research/experience for my upcoming book on regenerative agriculture. They broke out a lot and were a general pain in the ass.)

The doctors suspected neurosarcoidosis because they had eliminated so many other things, but after a week of tests at the Cleveland Clinic, they still hadn’t eliminated primary spinal cancer. They presented my case to the tumor board that suggested I have a biopsy on my spine. The surgeon even thought the scans looked more like cancer than sarcoidosis. He listed off the types of cancer which I googled and wished I hadn’t. Basically they were all death sentences. 

So, I had the surgery, which could’ve left me with a paralyzed arm or leg or worse, but just left me with an even more numb leg and foot. The surgeon thinks I’ll get all feeling back eventually. Nerves grow at about 1mm per month. 

But the bad news is I have neurosarcoidosis and will have to be on a heavy dose of meds and infusions for two to ten years or the rest of my life. That’s a lot better than cancer and death, a fact that has lifted my spirits from the moment I came to after the surgery and heard, “It’s not cancer.”

I’ve been receiving infusions of Remicade and injecting myself weekly with Methotrexate since October of 2024. Seven months of this and my most recent MRI showed that the lesion, known as a granuloma, is nearly gone. The medicines are doing their job. 

I still have numbness, pain, and feel fatigued, but I’m getting better every day. So the good news is that for a little while longer I can fight crime or take a knife stab in the butt from my wife.

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What follows is a blow by blow account of my journey. I suspect it’s a little too much detail for the general reader, but I’m hoping that it can help someone else. If you suspect sarcoidosis, please get to someone who specializes in it ASAP. I love the Cleveland Clinic and I’ve heard that the Mayo Clinic and Johns Hopkins have good sarcoidosis programs. If weeks and months are going by as you wait on tests, try to find someone who will admit you. The sooner you get an answer the sooner you can get help. If I would’ve had a diagnosis earlier, I wouldn’t be in the pain I’m in now. From what I can tell, many don’t get diagnosed soon enough and have much worse outcomes than they could. 

Sarcoidosis, the formation of granulomas somewhere on the body, is rare, affecting around 200,000 Americans. And of those people, neurosarcoidosis, the formation of granulomas on the central nervous system, impacts 5-10%. Or as one of my friends put it, “I heard of neurosarcoidosis on an episode of House!” That’s never good. No one wants “House diseases.”

I’ve joined sarcoidosis and neurosarcoidosis facebook groups, and it has become obvious that many doctors don’t know much about the disease, leading to worse outcomes than mine. My granulomas were growing and could have continued to grow until I lost control of the right side of my body and maybe even worse things. 

Given that many who have suspected sarcoidosis or even a diagnosis are left fumbling for answers, I’ve listed out my experiences in a timeline below. Some people say that the symbol for sarcoidosis is a snowflake because no two cases are alike. So let that be the caveat for all that is to follow. This is my experience, and it’s likely different than any other. 

January of 2024

My right armpit felt like it had a rash, but there was nothing visible. I tried to make an appointment with the dermatologist, but it was going to be a sixth month wait.

February of 2024

My right pinky and ring fingers went numb. Yet when I touched anything cold, pain shot up my arm. It’s like they were sensitive teeth. I was getting increasingly uncomfortable. I decided I should go to the doctor, but I didn’t even have a primary care physician. Stopped by an urgent care facility in Muncie. The doctor thought I had a pinched nerve. X-rays didn’t show that, but he thought that’s what it was. Prescribed some steroids and PT. 

March of 2024

Symptoms continued to spread. Visited walk-in ortho clinic. Sounded like a pinched nerve to them as well. Scheduled an MRI. 

April of 2024

Thirty minutes after I got home from the MRI, I got a call from a very concerned ortho doctor. She told me I needed to go to the ER immediately. 

ER did another MRI, this time with contrast, which showed an active lesion. Or as my wife’s cousin put it, “Your spinal cord is swollen and they don’t know why.” More tests. Spinal tap which made my whole body feel like it was electrocuted. PET scan. Maybe something else. Doctor who was rushing me around from test to test flippantly shared her theory as we walked to another test, “I think you have MS.” Also on the list of things was cancer and meningitis. After they eliminated immediate danger, I was released and left to schedule an appointment with a neurologist in Indianapolis. 

May of 2024

I couldn’t get into the neurologist for a few weeks, so I went to my new primary care physician. With the possibility that I was having an MS flare-up, he prescribed five days of a high amount of steroids. I was gulping down 35 pills per day and felt like I could fly. I could only sleep a few hours each night. 

Once I got into the neurologist, he thought it could be a one-time demyelinating event or as I started to call it, singular sclerosis. He sent blood to the Mayo Clinic and signed me up for more tests. I was to reach out if the symptoms got any worse. 

June of 2024

The numbness spread to my chest, stomach, and down my back. I also had pain in my chest, back, and shoulder. The neurologist scheduled another MRI that showed the lesion on my spine was growing. He suspected neurosarcoidosis. He scheduled another spinal tap. The first left me bedridden for a week. He also scheduled  me for a PET scan. 

May-July of 2024

As spinal tap neared, I canceled the appointment because I had some spinal fluid leakage during the first one that left me bedridden for a week. Insurance denied PET scan. Weeks go by and the pain and numbness got worse. I rescheduled spinal tap after talking with the neurologist because if the spinal tap showed signs of sarcoidosis, he’d treat me. 

August & September of 2024

The lightning bolts of pain become unbearable. I learned of a friend’s dad who was treated for neurosarcoidosis and had a positive experience at the Cleveland Clinic under Dr. Brandon Moss, one of the world’s foremost experts on neurosarcoidosis. 

I contacted the Sarcoidosis Center. They scheduled me for an appointment in October. I responded that I was miserable and couldn’t imagine I could make it to October. The nurse was going to talk to Dr. Moss.

When I saw a number from the Cleveland Clinic calling, I ran out of my first meeting at my new gig teaching at Ball State’s Honors College. It was a Friday. Dr. Moss said he would admit me on Monday. This would expedite the process. As an admitted patient I could have test after test and not have to wait for weeks to get scheduled only to have insurance deny it. The Cleveland Clinic knew how to handle the insurance companies, which was necessary because as one doctor (not Dr. Moss) put it, “The insurance company doesn’t care if you live or die.”

I had more MRI’s, a PET scan, two spinal taps done by a doctor who had never done one and they were both way better than my first. A surgeon scraped the inside of my lungs, the place sarcoidosis is most commonly found, and detected nothing. I had so many blood tests and examinations I thought they were messing with me. At one point I even had a sonogram on my balls. Perhaps even more painful than anything I went through, was trying to make small talk for 20-minutes with the dude doing the lubing and scanning. 

The tests were inconclusive for neurosarcoidosis. My case was presented to the tumor board, and they thought it might be cancer and that a risky biopsy would be worth it. After a week of in-patient tests, I was scheduled to consult with a surgeon the following week. 

I went home for the weekend and hugged my kids. 

Annie and I packed our bags just in case. The surgeon pulled up the MRI of my spine and showed us the spot. It looked like a Skittle was in my spinal cord. He thought it favored cancer more than neurosarcoidosis. He had an opening the next day.

That night Annie and I discussed all the things she needed to know in case she had to do life without me. Worst night of my life. 

The surgeon performed a laminectomy, cutting away a part of a vertebrate, to get to the cord itself. And then he began to biopsy the Skittle. The previous day he talked about how he was sort of flying blind. The threads of the spinal cord are much too small and complex to fully know what each cut would do to me. They had my limbs hooked up to sensors that would know if I lost function. But if that happened there was no reversing it. The surgeon would take a slice of my cord and then hand it over to a pathologist. The surgeon removed three or four slices before one finally tested positive for neurosarcoidosis. 

After five hours of surgery, I woke up unable to feel my right leg but able to move it. That was sort of terrible, however it was made less so by the news I didn’t have cancer. I had a definite diagnosis of neurosarcoidosis. 

Not everyone gets a definite diagnosis. That only comes from a biopsy and sometimes biopsies can be too hard to get, especially if the granulomas are found in the brain or spinal cord. Some get a probable diagnosis where a suspected granuloma is found and other possible diagnoses are eliminated. Others get a possible diagnosis where there are symptoms of sarcoidosis, but no granulomas are found. 

The recovery was brutal. I had to learn to use my leg again. Getting out of bed was miserable. The surgeon said it was the most painful surgery he does.They referred to it something like “the cross of pain” since they cut through a foot of my back muscles. The day I thought I was going to get to leave, the surgeon determined that the wound was leaking too much, so he needed to go back in. This time he’d cut a tendon out of my leg (“use the numb leg please”) and use it to patch the spot on my spine that was leaking. 

The pain from this second surgery was worse. I couldn’t get out of bed for two days. 

In total, I was in the hospital for five days of testing and nine days with the surgeries. 

My family, neighbors, and community rallied around Annie and the kids, delivering meals, sending us doordash, mowing our yard, and helping me for weeks. My parents helped me walk. Fed me. Annie bathed me. I was basically a 175-pound baby. 

October of 2024

I went back to the Cleveland Clinic to see my doctors and they set up a treatment plan: monthly infusions of Remicade and weekly injections of Methotrexate. 

November of 2024

I returned to teaching in person. I teach on Tuesdays and Thursdays for five hours. I needed every bit of my off days to recover. Having something to do and issues to talk about was life-giving. I’m so thankful for my patient students and the community at Ball State who allowed me to continue working. 

April of 2025 (the present situation)

I’m able to do much more. I go for long walks. I’m doing yoga. I can play basketball with my daughter, Harper. And now she can legitimately beat me one-on-on. I also go on bike rides with Griffin.  

I’m still in pain. Water from the shower still hurts my chest. The lightning bolts have stopped for the most part. The further I get from an infusion, the more the pain increases. It’s bearable. I have much more of an appreciation and empathy for those who live with chronic pain and fatigue. 

This week I met with Dr. Moss. The Skittle has shrunk and is almost imperceptible. I was surprised because a lot of my symptoms remain. The good news, no more damage is being done. The meds have worked.

I drive to the Cleveland Clinic once a month for infusions. I could get Remicade infusions closer to home, but I don’t trust that other doctors know enough about the disease. I’ll continue to drive to Cleveland until we get everything dialed in. They are upping the amount of my infusions hoping to increase the benefit of how they make me feel. 

Neurosarcoidosis is something I will have to live with the rest of my life, but at least I have a life ahead of me. And I believe that life will be even richer now. 

I remember getting home from my surgery and hugging my kids. I remember sitting outside and the sun hitting my face. I remember the first time I could feel the grass on my numb foot. 

I’m grateful.