"Hi my name is Emily. I’m 32 years old from upstate NY.
I received the J & J vaccine on the morning of April 5th, 2021. That evening I had the “ normal” body aches, chills, fever of 102, and also numbness of my face, feeling like needles in my legs, my stomach became extremely bloated. This lasted for about 10 hours.
The next morning I was tired but most of the other symptoms had gone away.
A couple of days later I began experiencing extreme fatigue, numbness on the whole left side of my body ( leg, arm, face) pressure and pain in my left ear.
I went to my doctor and they almost completely dismissed my concerns and said I was fine and no infection of the ear and that was it. I immediately switched my doctor and wasn’t seen until the next week. The morning of my appointment, the J & J was recalled for blot clots. The doctor listened to my concerns and said he thought that I may have either a blood clot on the brain or possibly MS. I got a whole blood work up and was sent for a CT scan of my head. All came back normal except for my vitamin D being low. They prescribed me high dose vitamin d to take.
I was able to get in with another doctor in the practice who did more of a blood workup and neurological tests.
In this time frame I had nights where I woke up with paralysis of my left side of my face, I couldn’t open my eye. My left leg looked visibly swollen. I went to the ER.
The ER did more blood work and sent me for an MRI. The MRI came back “ normal”. I was again sent home.
I felt like my body was shutting down. I was getting no answers. My doctor said he thought with time that these symptoms would go away and that this was my body’s immune response to the vaccine causing inflammation in the body. He also mentioned that most peoples side effects go away within 6-8 weeks. He said that other people are having pain where they had previous injuries or surgeries after getting the vaccine.
I was referred to a neurologist and an ENT doctor. Which it was going to take 8 weeks to see neurology and 3 months to see ENT.
In this time frame my symptoms started to change. I started getting not just numbness on and off now but weakness and pain in my left leg and arm.
I noticed that sugar and chocolate seemed to be effecting me more so. I had okay days and bad days. I started journaling what I was eating. I had brain fog. I started experiencing neck pain as well.
I finally was able to see the neurologist and he said that he thought I had vestibular migraines and maybe fibromyalgia. He did more blood work. All coming back normal.
He sent me for another MRI of the spine. He said that other than possible whiplash in the past that also looked normal.
I was seen by ENT in June and he said that he thought I had TMJ/TMD. I did some research and tried getting in for a consult for Invisalign to fix my bite. If this was truly part of the issue.
At this point my symptoms were not just these but also I felt like I couldn’t think. I felt like I had to think about moving my legs, and my legs felt like jello. My brain and thoughts were not connecting with my speech. So many times I would just blank when talking to someone or talking on the phone. I physically could not speak. Like my brain was just shutting down. I would be in my kitchen about to do something and it felt like every 5 seconds I would pause and have no idea what I was doing. It was truly so scary. I did another visit to the ER and waited 5 hours without being seen. I left.
I felt like symptoms were getting worse during certain times in my menstrual cycle. Worse right before my period it felt like.
Several times I went back to my primary doctor. Finally I asked him to please take my blood sugar as I felt that something was wrong with it. I had taken it at home a couple of times and once it was 45 upon waking up and another 70 upon waking up. I didn’t know if my reader was faulty or what.
My doctor tested in office and it was 80. After I had already had breakfast. He also took my A1C and he diagnosed me with reactive hypoglycemia. He said that my body is creating too much insulin. He told me to start eating protein/ fiber and whole grain/ wheat for every meal and to keep track of it.
I asked if there was anything else I could do and he said no, insurance will not cover anything unless you have high blood sugar/ diabetes.
I started truly looking at what I was eating and cutting out refined sugar almost completely. I feel this has helped a lot. I am doing so much better than I was. I still have numbness on and off and I can’t exercise without my sugar getting so low that I’m shaking/ can’t think. My left leg gets pain often now too if I do too much and my left arm is still very weak. I have started physical therapy in august for what they call myofascial pain syndrome. It has helped but I am still having a lot of neck pain that keeps me up at night.
In all of this I was diagnosed with peripheral neuropathy, reactive hypoglycemia, Migraines, TMJ.
Doctors keep saying they hope with time that it gets better. It’s now over 5 months out from the vaccine. This journey has been the scariest thing that has ever happened to me in my life. I have never had any of these issues before and I was so healthy. I will only tell who I can when I trust someone but I truly am afraid to tell this story on social media. I wish I had the courage to share this with more people. I pray that I can get more answers as time goes on. I am better than I was so that is what matters. I am trusting the lord will heal and time. I am looking into regenerative medicine / iv therapy now after hearing Madeline Johnson’s story. "