My Story

Early May of 2022 I noticed some tingling in my feet. I did not think much of it and continued on living my life and playing soccer. After a couple of days I told my parents and my high school trainer, and both thought my calves were tight and I was just overworked. I took a couple days off and tried going back to practice and the same issue showed up. At this point my trainer thought I had compartment syndrome and secured me an appointment with an orthopedic and my pediatrician set up an appointment for me to get blood work. I got my blood work done and went to the orthopedic and he told me that I should get an MRI of my spine and brain and an EMG because I did not have compartment syndrome. 

I went and saw a neurologist and she agreed with the pediatrician. After a couple weeks the tingling went into my hands and my pediatrician thought it was anxiety from the build up that went along with making a decision to commit to Gettysburg College for soccer and the stress from my AP exams. 

After the MRI and EMG the doctor confirmed there was a virus attacking my nervous system and that we should see a neurologist immediately. 

In early June, we saw my neurologist at Children's Hospital and she conducted a second EMG.  After that EMG I was immediately admitted to the hospital for 4 days. Those 4 days would consist of IVIG infusions, a second MRI to rule out any brain tumors, and a spinal tap.  After all of the tests they ruled out a brain tumor, MS, and other diagnoses. The spinal tap numbers showed that there indeed was a virus attacking my nervous system. 

Then came the diagnosis - Guillain-Barre Syndrome (GBS). After the 4 infusions I left the hospital and felt great. I went back to running, playing soccer, lifting, driving, etc. In July I went on a trip with my best friend and I noticed the tingling came back. Once I got home we went back to the hospital and I was admitted again for 4 more IVIG infusions. This time I noticed weakness in my arms and legs along with the tingling. 

New diagnosis - Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). The second set of IVIG infusions did not work as well as the first time around and was told it would just take time for them to work. They gave me Gabapentin to help with the tingling and said I would have infusions once every 3 weeks. The weeks went on and I got weaker and weaker.  

I got to the point where I could no longer walk, drive, write, hold a pencil, text, go to school, play soccer, shower, dress myself ... the list goes on.  I missed my first day of senior year because I was admitted again for more infusions and it was starting to get really tiring and frustrating, but I continued to fight.  

Two years later, I am relieved to say I am in remission.  Now, that I am back on my feet, it is my time to pay it forward.  Love From Lucy will allow me to give back and get the word out about my rare autoimmune disease and provide support to those battling similar neurological disorders.