tingling feet

In May 2019 I was diagnosed with a rare auto-immune disorder by the name of Guillain Barre Syndrome. Fast forward to now May 2020, I wanted to begin to tell my story. 

The first symptoms I can recall began on the week of May 13, 2019. In a Monday meeting at the office my boss asked the simple, “So how are you doing?” and I can remember so distinctly saying, “This is going to sound weird but my feet are tingling. It's like my shoes are too small.” Laughing it off and definitely shrugging it off as nothing to be worried about. I can recall mentioning it to my wife Kenz that night, only coming up with the idea that tomorrow I’ll wear a different pair of shoes. 

But Tuesday was much the same, and by Wednesday I began noticing my hands beginning to tingle. But like they say, “Ignorance is bliss.” Wednesday night I was with our Church Youth Group playing a serious game of dodgeball. I knew I was out of shape, but in the back of my mind I knew I pushing through something I didn’t fully understand. Looking back I can recall feelings of anxiety building in the back of my mind coupled with utter complete denial. That night, I couldn’t pick my daughter up out of the bath. I semi-blamed it in on being sore from dodgeball but lurking in the back of my mind I knew something was wrong. By Thursday my feet and hands were constantly tingling, like pins and needles, completely numb, throbbing on fire, not good at all. I think the hardest part of this whole thing has been knowing I can’t control my body. 

Friday I was able to go in and see my primary care doctor. I’d never met him and didn’t even know his name. Which says how often I went to the doctor...never. Seeing him was the worst. I explained my symptoms, held up my hands and said something to the effect of, “My hands are numb, throbbing pins and needles constantly.” With a few pinches of my finger tips, a few random questions I can’t remember, he sent me off to to do blood work. Zero answers. That night I kinda of felt like, maybe I’m just making this up and it’s not as bad as I feel it is. So I moved on. Back at home I took sometime do some maintenance on my project car. Working through the numbness, I found myself unable to break loose the easiest of bolts on the car. The symptoms were progressing up my arms and I didn’t even know it. At one point, I found myself using my breaker bar on the easiest of bolts because I couldn’t do it otherwise. Finally, when I was lifting this somewhat heavy coilover into the car I felt like I had nothing left. I just couldn’t lift it anymore. Alone, out in our yard, I finally settled into the fact that this is crazy and something was very wrong. A serious feeling of being incredibly vulnerable seemed to sweep through my entire body. It’s like I finally realized it wasn’t a mind over matter thing; something was really wrong. 

Over the weekend, Kenz and I both seemed so unsettled waiting for Monday’s blood test results. Hoping it would give me some indication of what was happening. What happened Monday seemed to set off a new understanding of how difficult it can be to navigate the health care process. First thing Monday, 9am I called the doctors office and was welcomed with zero information regarding my results and told to call back at noon. A chance to rush to my car during lunch couldn’t come fast enough. At this point, I was arguing with myself whether walking was getting harder. At one point in the morning I needed to go the 2nd floor of the office which is a flight of about 20+ stairs. I honestly didn’t think I was going to make it up it. “Seriously,” I told myself over and over again. Arguing with myself if I was just being dramatic and playing into some weird fantasy that something was actually wrong with me. Getting into my car seemed even harder. I do drive a truck that’s lifted and higher off the ground so I thought to myself, “Well maybe it’s always been this hard to get up into it.” At exactly noon, I dialed the doctors office to once again be told they do not have the results. A wave of emotions seemed to flood over me and crack in my voice as I expressed my frustration to the nurse that I was hoping to get the results. Told to call back later, I reluctantly went on with the rest of my day. 

Walking down a long narrow hall of the office I found myself drifting towards the wall and literally riding the wall with one shoulder to stay up. But of course, I shrugged it off saying to myself, “Seriously don’t be so dramatic.”  I rushed out of the office a little early in hopes to make the call to the doctor on my way home. Feeling incredibly anxious, and trying to wrap my head around this flood of emotions that seemed to be building in the back of my mind, I was once again told that the doctor was not available to review the results for me and to call again tomorrow. I seriously began to cry and told them that there is something seriously wrong and I needed help. Perhaps feeling a little compassion, I was put on hold and eventually the doctor came on the phone. He indicated that nothing in the blood work appeared out of normal and expressed little concern for next steps. I broke down telling him something was wrong and tried to verbalize the growing symptoms. Realizing, this was the first time I had verbalized some of them. It hit me so hard and I just felt completely overwhelmed. He told me he would refer me to a Neurologist, and to give him a call first thing tomorrow to get the contact info. It’s like a slight glimmer of hope came over me because I was going to go see a Neurologist to figure this whole thing out. 

The next day was May 21st, one week after feeling initial symptoms of tingling feet. On my way to work I finally came to terms that I was just slowing down. I barely made it into the car, I almost got into an accident and barely made it into the office. I called my friend Kasey Pierce, whose a Chiropractor, thinking this has to be a pinched nerve of some-sort. Talking through it with him, we both were perplexed to hear me verbalize the symptoms. Everything was parallel. Simultaneously and equally both feet and both hands were constantly tingling, numb, pins and needles on fire. Kasey decided he would call around to some of his colleagues and get back to me. Immediately, I called the doctors office and got the info for the Neurologist. Hang up call the Neurologist. “Due to your HMO plan, we should be able to schedule you in about two weeks.” You have got kidding me. This moment, is the beginning of what will become, a long life lesson in understanding insurance coverage. 

Hanging up and feeling completely defeated. I headed back into the office. Sitting at my desk I realized I couldn’t even type anymore. The tips of my fingers were the most numb. When I say numb, I mean, completely numb to any touch or sensation. Messaging back in forth with Kenz all morning of what to do, those feelings in the back of my mind slowly were coming to the forefront. It was finally becoming clear that something was very wrong. At about noon, I decided I was going drive myself to the Emergency Room. I wrote my boss an email saying something of the effect of, “I am headed to the hospital. Something is definitely wrong with me and I need answers.” 

Symptoms

• Polyneuropathy - Numbness, tingling and pins & needle throbbing equally in both hands and feet. Tips of fingers and toes being the most numb.

• Weakness & Fatigue - Muscle weakness in both legs and arms. Inflammation of nerves reduces the efficiency of electrical impulses and messages sent from the brain. The shorting of this cycle increases energy loss resulting in motor and sensory dysfunction and fatigue.

Looking back at the progression of symptoms the initial week leading up is the best I can recall. What triggers auto-immune diseases is not fully understood. Symptoms also seem to vary dramatically across each individual.  With that, I wish I knew my body like I do now, back then. The last time I surfed on my regular short board was May, 17 the Friday before. It was a fun day after work session at Oceanside Pier with Kasey Ross. I took this video May 10, 2019. Creating a novel sand bar but also extremely murky, not the cleanest, water. I wanted to note this in my initial post because I want to come back to a stand-alone post all about plausible trigger events. I love surfing, it’s been a driving passion of my life for a long time. It’s hard having it taken from me.