My F.N.D. Diagnosis Story

I was diagnosed with Functional Neurological Disorder in December of 2019, at 18 years old. 

Honestly, I am struggling to write this. I try not to be negative but when I talk about this, but I find it extremely difficult to be positive. This was by far the most trying thing I have ever had to endure. The waking knowledge that I  will fight with my brain for the rest of my life when I have just barely started living it, is absolutely crushing.

I was on vacation with my boyfriend’s family in San Pedro, Belize. We were there for a total of ten days and the first seven were an absolute dream. I completely fell in love with the sunshine and the purity of the clear ocean. I felt at home there, and I can’t wait to go back. On the eighth day, we (the older kids) decided to go on a day trip to the mainland (we were staying on the island). We left the resort at about 6 a.m. and headed into town for breakfast before we left on the ferry. After eating a disturbing breakfast burrito( the “sausage” was a cut-up hotdog), my stomach wasn’t feeling great. We then boarded and, after the hour and a half ferry ride, we arrived on the island only to be told that we couldn’t go cave tubing due to the flood. Instead, we opted to go to the Mayan ruins. First though, we were picked up by our guide and headed for the zipline site, about an hour away. The ziplines there are just a little different from home and actually require you to stop yourself with your hand, which is slightly nerve-racking when you are staring at a giant tree that you will slam into if you can’t oh and if you stop too soon you will be stuck in the middle of the line. So, after doing a few trials we finally started going on the bigger runs and we had a blast! Our next stop was lunch and as part of our day package we went to a traditional Belizean lunch. We had stewed chicken with potato salad, rice, and some sort of cole-slaw. About 20 minutes after we ate I started to feel really sick to my stomach, and we still had to go to the ruins. When we got to the ruins, I could barely enjoy it because of how sick I was feeling. But, I did my best to at least keep a good attitude. The entire ride back to the dock site, I was curled up and getting even more car sick. Finally, we made it to the dock and I tried to just drink some water and calm down while we waited for the ferry. We all got in line, and I was getting really drained and even leaned into Hunter while we were still in line.

We all got on the ferry boat and sat toward the front. There were a ton of people on board, we were totally packed in like sardines. It started to get a  little choppy, and we were getting splashed constantly. People were starting to get uneasy from the rocking, and my best friend even started to get a little nervous. I was playing a word game on my phone to try to distract myself and I couldn’t pass a level so I handed my phone to Jalynn for her to try.

This is about when I go blank.

So, from what I have gathered from hearing this story a million times from everyone else. I looked like I was sleeping for about 45 minutes until we got back to our docking site. Hunter said I felt very heavy like I was in a deep sleep but I was still breathing so he just continued to let me “sleep”.  When he tried to wake me up, I was completely limp and wouldn’t respond. I then started to cry ( without opening my eyes) and mumbled “can’t move”. I proceeded to go back and forth from crying and hyperventilating and going unconscious. The mate on the boat came over and was sticking alcohol swabs in my nose to try to get me to stay conscious. This part I can kind of remember from smell memory, I can recall David yelling for an ambulance and the mate trying to coax me awake, but after that I lost consciousness again. After about 30-40 minutes on the boat the ambulance came and they had to load me on a stretcher and ended up shutting my foot in the door of the ambulance. I have a faint memory of Hunter yelling at me to stay awake. The ride to the hospital was quick, maybe only 2 or 3 minutes. When we arrived they gave me a shot of Valium and started me on IV fluids. After 45 minutes I started to wake up, the very first thing I could see was the bright light being held together with duct tape about 2 feet from my face. Then, slowly but surely I could recognize Hunter, then MK, and then finally Rich and Jess. I asked what happened because initially I thought we were in an accident, then I realized no one else was hurt. They first told me I had fallen asleep and woken up in a panic attack. I was trying to regain my thoughts and recall what really happened. I remember trying to tell them I didn’t fall asleep, I just knew that didn’t happen. I regained most of my movement and speech and they let me leave with the notion that I would be back to normal when the Valium fully set in. So, we headed back to our resort and Hunter’s parents had us sleep in their condo so they could keep an eye on me throughout the night. They graciously made me spaghetti and got me clothes so I could take a shower. I just remember feeling so helpless not being able to shower or even go to the bathroom by myself. I was also in the most pain I had ever experienced. My entire body was aching like I had been hit with a freight train. I also had a small bruise developing on my foot from the ambulance door.

The next morning I woke up and I could talk almost perfectly and could even walk for the most part. I thought the worst was over and I would just figure out what happened when we got back home. Unfortunately, I was wrong. I really wanted to go back to mine and Hunter’s room, so I convinced him to walk over there with me at about noon. What was normally about a two-minute walk turned into about 30 minutes of me stumbling and holding on to Hunter. When we finally made it into the room, I wanted to watch NetFlix and just relax. From what I remember I somewhat fell asleep and when I woke up, I started to stutter really badly and was struggling to move again. Hunter, MK, and David were very concerned and decided they wanted to take me to the newer hospital on the island. Hunter and David helped me walk to the taxi ( we had the best guy, who took us in one of the few taxis there, back and forth and made sure I was okay the best he could, he was totally awesome!) When we got there, they immediately put me into a bed and took vitals. They said I was dehydrated and started me on another IV. The doctor there listened to everything Hunter was relaying and made the conclusion that I had a horrible case of strep throat. She then gave me a double dose of Rocephin in an IV drip along with the two liters of fluid. They gave me Xanax and the rest of the Rocephin (the pills) to get through the next day of traveling home. I did have the option to fly to the mainland alone and catch the first international flight home in the morning but I decided I was too nervous about being on my own. To be completely honest, this doctor seemed a little off, considering she used the flashlight off the back of her iPhone to conclude I had strep that would lead to meningitis. However, it was really the only answer we had and all of our main priority was to just get back to the states and go from there. 

So, the next morning we got up fairly early, Hunter and David once again loaded me into the taxi and we headed to the small airport to get on our first flight. I don’t remember a whole lot from the last few days there, I do however remember the most amazing egg, ham, and cheese croissant that I have ever had. Thank you Jessica for the only highlight of December 20th, 2019. The beginning of the day is still really fuzzy to me, but I do remember begging to brush my teeth at the airport (for some unknown reason that was my priority). I don’t remember waiting for the flight from San Pedro to Miami, but I do have a picture of me that Hunter took. Evidently, I took a nap on the flight, because I don’t recall anything. When we landed, we immediately tried to get on an earlier flight so I could get home faster. But, we couldn’t get anywhere near home any faster than a five-hour layover. Finally, we boarded the plane. Needless to say, after 3 liters of fluid in an IV over the past two days, I had to pee literally every 15 minutes, which when you can’t walk, totally sucks by the way. They put me in the window seat and Hunter was next to me, unfortunately, the outside seat was taken by a random passenger that was just trying to sleep. And every time I had to get up to pee I had to have Rich and Hunter, help me walk there. On top of that issue, I was also extremely nauseous and feeling claustrophobic. But by the grace of God we finally landed. Hunter had earlier packed my backpack and his as well, with all of our essentials so when we landed we wouldn’t have to wait for our suitcase and we could just get out to my mom waiting for us. As soon as we got outside, I just remember shivering and almost convulsing. I think  I was overwhelmed with being exhausted, finally being home, and knowing that this journey was not even close to being over. I will never forget how I felt when I was finally able to see my mom, I immediately was crying and shaking. It sounds so crazy but it was like I could have some peace knowing that she was going to do everything in her power to make sure I get better. And also I am a momma’s girl.

My mom practically flew us from O’Hare airport in Chicago to St.Joseph Hospital in South Bend. We really wanted to be there because that is the system my beloved family doctor is. When we arrived in South Bend it was around 2 a.m. (at this point Hunter and I have been up for 20 hours). They immediately got me checked in and into an E.R. bed, there was no wait time at all, which was nice but also slightly concerning. Again, the first thing they did was give me another liter of I.V. fluids, evidently, I was extremely dehydrated. It was the middle of the night, so there weren’t a lot of tests they could run immediately, but they did test for strep and influenza, they also started blood and urine cultures that they took repeatedly over the next two days. By the time they were done with these initial things, it was 4 a.m. and My Mom and Hunter were asleep in the waiting chairs. I remember feeling just completely wide awake, just waiting for the rest of the hospital to wake up so I could get some more answers. The last time I looked at the clock it was 5:20, and I finally let exhaustion take over. 

The nurse woke me up around 8 for my first CT scan. They ended up having to do this twice because the first time the contrast leaked all over my arm (by the way the contrast is red, so it was a little scary to see red dripping out of my I.V. and all over my arm). When I got back to my room, the doctor came in with the first round of blood and urine cultures all of which were negative, along with a negative drug, alcohol, and pregnancy tests. He then said that I would be admitted within the hour or so. The next test was an EKG, everything was again normal. I was then transferred to my own room, which was a nice change to be able to relax a little more without the chaos of the emergency room. I don’t remember the actual moving of rooms, but I do remember taking a small nap and then having something to eat. During this entire process I felt like I was starving at all times, I couldn’t get enough “comfort” food. My nurses came and introduced themselves and got my heart monitor hooked up. Since we were told to plan on staying until they had figured this out, my mom had gone home to get cleaned up and brought me back some essentials to clean up as well. Later that night I had an ultrasound done on both legs, feet, and my lower back and belly, to rule out any blood clots. They continued to wake me up every hour for vitals and every two for new blood cultures.

The next morning came with another negative result from the ultrasounds and a new round of tests lined up. I don’t remember much more of the morning other than the Neurologist that came to do some testing and evaluation. He ordered an MRI/MRA/MRV. I remember the ride down to the machine and everything about the room, I had my mom go with me and wait for me in the waiting room. I was pretty calm until they closed the mask over my face, then it really hit me that I would be in there for an hour and a half just trying to keep my anxiety at bay. I can remember dreaming vividly and being woken up by the nurses reminding me it’s almost over and to just hold as still as possible. The relief I felt when they finally pulled me out of there was indescribable, there is nothing like being in a giant magnet with your head in a cage and not being able to move for what feels like forever. When I got back to my room I had several visitors, which brightened my mood and made me very thankful that I had gotten a little sleep. After a few hours, everyone had pretty much gone home, and the results of the test came back that everything was normal. When I first heard this I felt really defeated and scared that I would have to get a spinal tap. I feel like I had been quite a trooper but I don’t think I could make it through a spinal tap at all, and I was so thankful the Neurologist felt he wouldn’t need one. I was again woken up every hour for vitals and every four for blood cultures. The next morning the neurologist had almost concluded that I had F.N.D. but wanted to have physical, occupational, and speech therapists evaluate me. By this point I was exhausted and everything was starting to weigh on me. The physical and occupational therapists came in first, they watched me walk and did strength tests. When the speech therapist came she had me read the rainbow passage, which I later learned I would come to know this passage very well, I was stuttering and could barely get out a sentence. I remember feeling so frustrated and embarrassed I started to cry.  She said that my stuttering was more consistent with someone with a neurological disorder. After a few hours of visiting and normal hourly, the Neurologist came in and diagnosed me with Functional Neurological Disorder and explained to me what this meant. 

Functional Neurological Disorder is a medical condition that means the brain and central nervous system function improperly. This means that my brain either fails to send a signal, sends the wrong signal, or my nervous system doesn’t receive the signal normally. The structure of my brain is normal. It’s more like a glitch in the software of a computer, the hardware is just fine, it just functions wrong. 

Having this disorder can look vastly different on each person and each “flare-up”. For me, it temporarily took away my ability to walk, to speak without a stutter, to feel temperature sensations, to breathe normally (I was chronically hyperventilating), and so much more. Even though I will struggle against this disorder for the rest of my life, I know now that I am so strong, and that I can overcome the battles and win the war. I won’t let my disorder run my life. I know I will have many more things to face and that this isn’t over, but I will take the bad days with the good and do my best to remember that this isn’t my fault, I am not crazy, and most importantly, I am strong-willed and I can do this.