21 y/o Female's Journey with a Medical Diagnosis

I’m a 21 y/o female who, In February of 2022 was nearing the end of my first of three months abroad in Florence, Italy. Naturally, I was having the time of my life, already dreading my return home what I thought would be two months later. That weekend in particular we were supposed to leave for Vienna, Austria. I was so excited which is why it came as such a shock to me when I had an onset of symptoms not unlike an anxiety attack— it was so sudden that I had doubt it could be anything more serious. I tried to deescalate the situation but was in night class and decided that I’d just take a hot shower once I got home, thinking it would subside after. I got out of the shower and felt better but looked in the mirror only to notice that every muscle up and down both arms was twitching. The only way I could think to describe it was that it looked like mini fireworks were going off under my skin. After noticing it in both my legs and abdomen as well I decided to stay in Florence for the weekend and see a doctor. The only English speaking doctor in Florence diagnosed me with anxiety, telling me that this was all in my head, as muscle twitching is a side effect of anxiety most likely brought on by homesickness (if you know me you know that this is rarely, if ever, the case and especially at this point in time extremely inaccurate). After my symptoms worsened over the course of the day, I decided to check myself into the ER. Not only was I all alone, but Italy is still very stringent with their COVID policies so it took until around 4 AM to be seen only to be stuck with an IV and handed a Valium for what they also ruled anxiety, despite my protest. Long story short, the next night I was on a flight back to Florida to meet my parents for a neurology appointment early Monday morning. It was almost comical how quickly they found a problem— all he had to do was test my reflexes to realize something was off. Scary, but at least it wasn’t another person making me feel like a lunatic. After a full work up (EMG, MRI, blood work, etc.) the cause of my symptoms was still unknown, so he thought it couldn’t be anything other than inflammation in the spine triggered by the COVID vaccine, I was prescribed steroids to combat the inflammation and told that if this didn’t work within a few weeks, we’d do a spinal tap to look for signs of MS. I was scared but at this point we ruled out brain tumors, bleeds, etc. so if it was livable I was content. Since the spinal tap is relatively invasive, we decided to get a second opinion at the Mayo Clinic in Jacksonville with their MS specialist, she decided to perform a series of other tests similar to the ones I had undergone previously, their equipment is much newer than that of a family practice doctor so they just wanted to make sure nothing was overlooked before formulating a diagnosis. After what felt like the longest and most physically and emotionally taxing day of my life, I left hopeful. Just a few short days later (2 days before my 21st birthday) I woke up to a phone call from the MS specialist, she asked me if I could get my mom on the phone. I have no words to explain how sick I felt in that moment, clearly this was a bad sign. The rest of that call and the days following were honestly a blur, the only thoughts going through my head were the words she said to me before I blacked out. She told me she was sorry, and that she would be referring me to the ALS specialist. It didn’t even cross her mind that this could be it, I’m so young— it’s so rare. Medically speaking there’s a bilateral loss of my motor neuron cells (or something like that) as seen by my brain MRI and EMG, this is typical of patients with ALS. If you’ve ever known someone with this disease you know how aggressive and ugly it is, not to mention terrifying; unique in the way that it not only has no cure but very few treatments. I’m not sure what person could ever comprehend this diagnosis, let alone a freshly 21 year old girl, I’m still wrapping my head around the possibilities of the future. With that said, I am hopeful. After meeting with the ALS specialist at both the Mayo Clinic and Johns Hopkins, I have come to the understanding that almost anything is possible. My symptoms could plateau or even reverse at some point, this could be long term effects of covid, or some type of degenerative nerve disease that isn’t so aggressive and progressive it could be treatable. That brings us to today, almost 5 months after the start of this all and I’m still not 100% certain of my diagnosis. What I do know is that I feel strong, mentally and physically.