ABOUT THE CREATOR
My Turn To Be Vulnerable...
Hello, you may have seen my story on social media after my mothers instagram post went viral about my health complications following my Pfizer vaccine. This time it is my turn to tell you my story. Please, read with all ears and eyes open to what my new reality is, which sadly isn't all that different from thousands of others after their vaccine.
I am 21 years old and I should not have had to ever cry into my mom's arms and tell her that I am dying.
My name is Madeline Johnson. I am a 21 year old senior at Chapman University. I am currently pursuing a career in the medical field to become a physician. I was always such a go-getter, determined, and pretty busy between studying, being a college student, working in a hospital, helping run a floor for the program in my hospital, and more until my complications following the vaccine put a halt in all of this. I remember being on the hospital floor working when my hospital got its first few covid victims. While many were scared, I stood up and continued to aid those in need in the hospital throughout the duration of this pandemic. My experience as a health care worker allowed me to be identified as a frontliner who could receive the vaccine early. I CHOSE the vaccine and did not have any persuasion from work, family, mom, or friends. I made my own, very adult decision about my OWN health. I got the vaccine in order to continue to work in the hospital and aid the doctors and nurses who needed the extra hands without fear of contracting the virus and possibly spreading it to others that are at higher risk, including near and dear family members of mine and friends as well. Of note, the vaccine is also now being mandated for my university attendance.
I got my first Pfizer shot in the beginning of February. Following the shot I did not have any crazy reactions besides fatigue, headaches, and the feeling of being on a boat similar to motion sickness. I did not think much of these symptoms since we were all told you may feel a little weird for 24 hours. I received my second dose close to the end of February. Within 10 hours of my dose I began to have a fever and was shivering non-stop for the whole night until the morning. My fever started at 100 degrees and every hour it would increase by 1 degree, ultimately reaching 104 for the duration of the night. I had raging headaches laying down but they got worse when I would stand and walk around my room. The following day I had a 103 fever with another spike of a 104 degree fever and the similar symptoms of the previous night. For the next few days I had a fever that went between 100-102. I would say I was sick for approximately 6 days.
In March I began to complain of wrist pain. At first, I thought that maybe I injured myself lifting a bag or possibly that I slept on my wrist wrong. I kept my eye on it for a week or so and realized that it was only getting worse. I ordered a brace on Amazon to wear throughout the day and while I slept to ensure that I wasn’t worsening my pain. However, it got worse and it came to the point where I couldn’t use my right hand. Every time I tried to grab something like a door handle, the fridge,a cabinet knob, or even a pencil I was wincing in pain. I began to lose a lot of strength in my wrist as well which was difficult since it was my dominant hand and I am a college student who is constantly studying. In addition, I began to notice that it was harder for me to close my fist, almost like I had to focus and tell my hand what to do. Soon the pain increased and started to travel up my arm. I begin to have numbness in my fingers and my palm which at the time I thought maybe was due to wearing a brace so much. In April, the pain in my wrist became so excruciating that I was crying myself to sleep almost every night. It came to the point where I knew that I needed to see a doctor to see if I had severely injured myself because the brace was not fixing anything. When I went to see the doctor on April 26, I was given an x-ray and told to get an MRI of my hand and both came back normal. The only thing was that I had some inflammation in my wrist. At the appointment I kept bringing up the fact that my fingers had gone numb and now my palm was numb as well. The doctor looked at me with a puzzled face, he thought I had carpal tunnel due to the amount of studying and working that I do with my hands; however with carpal tunnel, your palm should not be numb. My symptoms were not aligning. He gave me a Cortisone shot in my right wrist in the area that was most inflamed in hopes of reducing the amount of pain. In addition, he ordered a nerve conduction study and EMG on my arm to determine whether or not I had carpal and cubital tunnel syndrome. I remember leaving that appointment bawling in tears because at that time I was told I would need possibly up to five surgeries to get my hand back to normal. Now, hindsight 20-20, that was the least of my worries.
The Cortisone shot did not change my pain level. If anything, I got severely worse. By the time I was finally able to attend my nerve conduction study and EMG appointment with a neurologist my numbness traveled from my hand/wrist all the way past my right shoulder. In addition, I had also lost all my muscle strength as well as my motor skills in my right hand, was unable to make a fist, and began to have hand tremors/twitches in my fingers. When I told the neurologist about my symptoms her face completely changed. The first thing she told me was to get my brain checked immediately. My nerve conduction study test and EMG came out perfectly, meaning that there was no nerve damage or nerve issues correlated with the numbness and other symptoms I was experiencing. When she checked my reflexes she was a bit concerned with my right foot and all she kept saying was to go to a neurologist and get my brain checked. Once again, another doctor appointment that I left crying uncontrollably because I had a far larger issue than what the doctors had expected. At that moment, I thought I had something severely wrong with my brain like a tumor or cancer and that my life was going to completely change.
The following morning I woke up and my right foot felt a little bit numb. I went down to my mom who was working in the garage and told her I felt a little weird but maybe it was just in my head because of the scary appointment the day prior. Within three hours I had lost complete control of my toes, ankle and almost my knee in my right leg. We raced to the ER and by the time I was in the waiting room I could not move my toes, my ankle, or my knee on my right side at all. I felt like my entire right side had officially gone numb and partially paralyzed. The first thing the doctor asked was if I got the vaccine and which one. That night I got a CAT scan to check my brain and luckily thank God, my brain was clear of any lesions or tumors. I also had a series of blood tests done that showed no indication of any issues. That also being said, the doctors had no idea what was wrong with me and this was the beginning of the many shoulder shrugs and “I don’t knows” from my doctors.
The following day, I attended a neurologist appointment to further discuss what could possibly be going on in my body. I remember maybe being in that office for approximately seven minutes and his first question was if I got the vaccine and which one as well. After him doing a quick physical exam as well as listening to some of my symptoms, he strongly thought that I had multiple sclerosis. I felt my body instantly get so hot and I could not speak. As soon as I walked out of his office I started to cry so hard. I’ll never forget that day because I was so terrified to go to the appointment in the first place and was so lost in the medical tower. There was this woman who almost missed the elevator and she asked us to stop it and if we could make room for her. Of course I said yes and told her to join in on our elevator ride and it turned out she was going to the same exact office as I. I got called in to be seen before her and I was only in that office with the doctor for a short time but when I left she was leaving her appointment at the same time. She saw that I was broken and that I needed a moment of positivity and some sense of hope. She grabbed my hands and asked if she could pray for me. While I’m not religious, I feel like there was some sort of reason aligned from up above for her to have been there that day, to be in the same elevator as me, to be done at the same time as me even though she was brought in after I was. I felt like my entire life flipped upside down that day and she was the first tiny bit of positivity I had. I felt so vulnerable crying and shaking in a woman’s arms as she prayed for me, a stranger. I wish to this day I could give her a million more hugs. Little did I know that before coming into my appointment that sweet lady in the elevator would be my angel.
There were many more cry sessions that day between me, my friends, and my family. Just a few hours after returning back from that appointment, my entire back began to go numb. By midnight of that same day, my left side had gone as well and I was beginning to lose the ability to move my toes and ankles. That night was really scary because of how fast everything was changing. My sister decided to take a shift of watching me and sleep with me in my room to make sure that I wasn’t going to lose function of any of my organs that would create even more severe issues like breathing problems or heart problems.
The next morning, I had yet another visit to the emergency room because I was unable to move both my toes, ankles and knees now in both legs. I was sent to do a total of eight images with an MRI of my brain and all three sections of my spine half without contrast, and the other with contrast. My MRIs came back perfect which concluded that I did not have multiple sclerosis. In order to be 100% sure, they did a spinal tap to check all the cells in my cerebral fluid as well as a test for Lyme disease and Guillain Barre Syndrome. They also ran more blood tests which came back perfect. Once again, my test results came back perfectly normal.
After a few days I was able to gain more mobility of my toes, ankles, and knees. While I thought this was a one time freak occurrence, I found out later that this random paralysis would occur at random times during flare ups. Luckily, the paralysis was not lasting as long as the first time but rather anything from 15 mins to 1 day in duration. I continued to have worsening symptoms like full body tremors, twitches in both hands and feet, severe numbness in my knees making it difficult to walk normally or to stand for a duration of time. I even began to have over a week of a low grade fever ranging from 99.2-99.8 degrees. In summary here are my symptoms I have been facing the past few months:
24 hour symptoms: full body numbness, unable to make a fist with both hands, loss of motor skills, muscle weakness, fatigue, hands/fingers twitching, brain fog, cold sensation in toes, severe inflammation in wrist and legs, difficulty walking (severe discomfort).
Symptoms that come and go with flare ups for different durations of time: random paralysis of lower limbs, full body tremors, intense numbness of knees, toes twitching, muscles spasms to the point where I was slapping people or throwing things down to the ground, chest pain, difficulty breathing and more.
I do what to note that I have good and bad days. My symptoms seem to change combination or location every week which has been both a blessing and a curse. I will have one day where I can deal with fatigue, muscle spasms here and there, and full body numbness and function a bit more normally. The next day I can be completely different and run a fever with an episode of full body tremors. It feels like we play whack a mole with my symptoms. Nothing gets better, but instead just hides and moves to a different area.
The next time I went to the neurologist, I was handed an order form that listed over 50 tests ranging from blood test, 24 hour urine tests, stool tests, and more. I was practically getting tested for everything in the book in order for them to do the process of elimination. I went to a LabCorp and got my tests done where they took nearly 30 vials of blood at one sitting and let me tell you my fear of blood and needles has really been challenged throughout these past couple months. I was also ordered to do a nerve conduction study on both of my legs. Of course, once again, all of my tests came back perfectly normal.
On July 5th I began to experience issues swallowing, drinking water, eating, and even inhaling too deep. Everytime I tried to do one of those things it felt like someone had their elbow on my neck while also the sensations of heart attacks in my chest on both sides. Anytime I tried to eat something easy like yogurt or tofu, I would only get 2 bites down while being in excruciating pain and bawling my eyes out. This triggered another trip to the ER which is where the video that went viral on my mothers instagram was taken. There, I got an EKG done, a series of blood tests, and checked for blood clots. All my tests were clear. Of note, the first thing they asked was if I got the vaccine and which one. I was then sent home at around midnight however I still felt uneasy about my ability to breathe being hindered. We went to another ER where they asked a ton of questions about my symptom timeline, when I got the vaccine, and what vaccine I received. I had more blood tests run and everything was clear. I was giving some pain medicine to try and let my esophagus and chest relax for a bit but even then I was still feeling the pain and pressure. But once again, I was given a shoulder shrug as to what was going on with me since I was looking perfect on paper.
I attended my final appointment with my neurologist who was at a standstill. He was not able to clinically diagnose anything based on my labs even though I had a crazy variety of physical symptoms I was enduring everyday. Instead of telling me it was out of his scope or that he was unsure, he told me that I was having psychosis and maybe suffering from a issue like “a bad breakup with your boyfriend” or maybe abuse at home or even that my body was telling me that my career choice is not the right choice for me. I walked out of that office and never looked back.
I am so grateful that my mom’s post reached so many people around the world because it opened so many doors for me to find care. A sweet girl from LA who suffered from similar symptoms from an antibiotic she once took reached out to me via dm. She put me in connection with her doctor, Dr. Mark Gahili who had been able to reverse her symptoms and give her life back. I have had one treatment so far with Dr. Gahili and already see so much more improvement in my health. I am now able to walk without as much discomfort or thinking, I am able to close my fist without tremors, and my tremors have nearly stopped completely! I am excited to continue my treatment journey with this doctor and return back to health and finish my senior year of college and prepare for my education in medical school! I will be doing a series of IV therapy (~5 sessions as of now) and possibly stem cell therapy later down the road. If you'd like more information about it, check out his instagram/website by looking up his name and you can read up!
I want to continue to advocate for myself and my health like I have these past few months, but also for others that are too scared to speak up. I have started this in hopes of creating some change in the way the vaccine is administered. We deserve #informedconsent about what is going into our bodies, how it works, and the possible side effects in order to make a well informed decision about our health and our bodies. I also hope to bring some comfort to those suffering to let them know they aren’t alone and that there is a light at the end of the tunnel! Don’t give up, speak YOUR truth!