Help Mark's Fight Against Multiple Sclerosis

Hello friends, family, loved ones, and everyone in between. My name is Mark, and I want to thank you for taking a moment to read my story and I hope you’ll consider sharing and supporting.

After a weeklong stay in Henry Ford Hospital and more tests than I can count—a CT scan, 3 MRIs, a lumbar puncture (also known as a spinal tap), an echocardiogram, and countless vials of blood, we’ve finally started to get a clearer picture of what’s happening to my brain and body. Initially thinking I had experienced a stroke, the neurology team I’ve been working with at Henry Ford strongly believes that I am experiencing a demyelinating disease with multiple sclerosis (MS) being the most likely culprit (keeping our fingers crossed that I don't have one of the even more aggressive forms of demyelination).

A demyelinating disease is any condition that causes damage to the protective covering (myelin sheath) that surrounds nerve fibers in your brain, the nerves leading to the eyes (optic nerves) and spinal cord. When the myelin sheath is damaged, nerve impulses slow or even stop, causing neurological problems. If you are curious about learning more about this type of disease and their causes, I highly recommend this article from Mayo Clinic that breaks them down in an understandable way: https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/expert-answers/demyelinating-disease/faq-20058521#:~:text=A%20demyelinating%20disease%20is%20any,even%20stop%2C%20causing%20neurological%20problems.

Anyway, onto my story:

On Tuesday, November 29th, 2022, I started feel dizzy, lightheaded, and disoriented. My normal balance and coordination was off, and I noticed when I got up from my desk and started walking, my left foot seemed like it was hitting the floor ‘wrong.’ I didn’t think much of it at the time—the symptoms lingered after I returned to my desk, so I contacted my boss to let her know I would be using sick time for the afternoon to go and rest. After a nap, I woke up to the entire left side of my body feeling numb and tingly, not too different from when you sit on your foot for too long and it falls asleep except from head to toe. I didn’t think much of this, either, chalking it up to sleeping in a funny position and being under a weighted blanket. Later that evening, I noticed the right side of my body started to feel the same way, but I was eventually able to fall asleep.

When I woke up on Wednesday, the symptoms felt even more intense, and I also had a severe headache, nausea/vomiting, and my speech was slightly slurred. After talking to my partner’s brother (thankful to have an ER doc in the family), I went to the emergency room and after an extremely long and painful wait, eventually made my way to the emergency department—first in the triage area and after about 16 hours from initially heading to the hospital, an actual room.

That Wednesday and Thursday, my coordination was almost completely gone and my mobility non-existent—I couldn’t walk 15 steps down the hall on my own to the bathroom, and even with assistance by the time I was done and back to my bed, I’d collapse in a nauseous sweat because it took all of the energy I had. I couldn’t keep food down at first and didn’t eat for a day and a half outside of a small pack of crackers until I finally kept some chicken noodle soup down. After the initial MRI showed lesions on a couple areas of my brain (the cerebellum and brain stem), I was moved up to the neurology unit of the hospital (and the next day, the newly re-opened ICU neurology unit). Before that, I had a lumbar puncture/spinal tap at 3:30am that morning, constant checks of my vitals, meetings with several nurses and doctors from neurology, and more blood draws throughout the day.

After getting moved to the neurology ICU wing of the floor, I was hooked up to several devices 24/7 for around-the-clock monitoring of my blood pressure, oxygen levels, pulse, and breathing. My vitals were fine, but there were a number of possibilities and the doctors weren’t sure exactly what had caused such a rapid decline and wanted to be safe. After more blood draws, another MRI, the echocardiogram, and results starting to come in from the tests that had already been performed, we started to rule out some potential causes, but both stroke and demyelinating diseases remained on the table. As weird as it sounds, I had my fingers crossed for minor strokes, because in my mind if we figured out what had caused them, we could figure out a way to prevent them moving forward and I could hopefully go back to living my life as normally as possible.

On Monday, December 5, I met with the neurology team again—a new attending physician had taken over for the previous doctor, and while still not certain, doubted the potential of a stroke diagnosis. He and the team were having trouble accepting that diagnosis as I’m 33 years old, in the healthiest and best shape I’ve ever been in, have a good diet and exercise routine, no risk factors, and no family history of stroke.

Later that week, as more test results came in, one test in particular from the spinal tap raised alarms—a test that compares something called Oligoclonal Bands in cerebrospinal fluid to a blood sample found at least four of the bands in my spinal fluid that were not in the blood sample, a strong indicator of MS. The day after that result came in, I received a call from Henry Ford to setup a follow-up appointment for the next week and I met with my primary care doctor who reviewed the results and my chart and agreed MS seemed like a strong possibility. A neuro/rehab doctor she referred me to see the next day confirmed the same, and after the follow-up this week with one of the neurology team doctors at Henry Ford, consensus finally is forming after all the doctors indicated the initial incident was likely my first MS ‘attack.’

While we don’t have full confirmation yet, it feels like we are very close to an answer, and in the next few weeks I have another MRI, appointments with a hematologist and a neuro immunologist on top of officially starting physical/occupational therapy. I am hoping that these follow-ups and upcoming tests rule out an even more aggressive form of demyelinating disease than MS, and that we can start to think about the next steps forward as we have not even begun to discuss my treatment and a plan to getting as close to full recovery as my body and brain will allow. I am extremely grateful to work for an employer that provides great insurance and has supported me every step of the way—however, I unfortunately do not have access to short-term disability and will soon be using the remainder of my paid leave from work (it goes fast when you’re losing 80 hours every pay period) and will enter unpaid status. I’ll still have my insurance coverage under FMLA, but there will likely be a significant period of time where the bills—both medical and everyday life—continue to roll in while I receive no pay.

I don’t want to ask for much, as my personality like I’m sure many of you tend toward not asking for help at all unless it’s absolutely necessary, but I am swallowing my pride and starting this GoFundMe to try and at least make up for some of what I expect I’ll be missing in lost pay over the coming months. If you cannot afford to give, then please don’t stretch yourself thin to do so—your support and sharing this with others is more than enough, and the messages of love and kindness, your visits in the hospital and now back here at home, the food drop-offs and delivery… they’ve helped over the past couple weeks more than you can possibly know. Your donations will help relieve some stress and make up for what I'll be missing as I enter unpaid status, including medical bills, the cost of getting to and from treatment, supplies we need at home, and more. If there is any help that you can provide, I will be eternally grateful for the support in this time of need and your help as I regain the stability to get and stay back on my feet as we get closer to treatment and a recovery plan.