Ron Lissak, FPN Board member, was interviewed by Brain & Life magazine for their most recent issue (June/July 2020) on his experience with COVID-19 and peripheral neuropathy.
Here is the article as it appeared in Brain & Life June/July, 2020
About 11 years ago, I was diagnosed with peripheral neuropathy. As a result, I have numbness in my feet, calves, and hands, which gets worse at night.
Until I was infected with the coronavirus in March, my peripheral neuropathy was more annoying than painful. After I got sick, it went into overdrive. I had much more pain in my hands and feet, and my balance was affected.
My COVID-19 symptoms were exhaustion, chest pain, diarrhea, terrible headaches, and loss of smell.
During the second day of symptoms, including chest pain, I went to the emergency department at Southwestern Vermont Medical Center to make sure I wasn’t infected with COVID-19 or having a heart attack. Over five hours, I had a cardiogram, a cardiac enzyme test, and a COVID-19 nasopharyngeal swab. Even though my test came back negative. Then, a week later, my neuropathy got much worse, and I went back to the hospital and was there for eight hours. Doctors were concerned about inflammation of my nervous system, and they increased the dosage of my neuropathy medication. I also had a blood test for COVID-19, but again it came back negative. One doctor said that they have no idea how the coronavirus works – that it’s going to take 10 years to understand all its effects.
The emergency department experience was strange. My family dropped me off and couldn’t come in. I didn’t know if I would see them again. I was alone in a room. I was petrified, I had no idea what the doctors were going to find and could only remember the scary stories about how the virus affects the body and how fast it can change. I was lucky that I didn’t have any lung issues and didn’t have to be on a ventilator. Between the pounding headache, exhaustion, diarrhea, lack of appetite, and no sense of smell, I felt like I was going crazy.
Once my symptoms subsided and I was released from the emergency department, I remained in quarantine for 20 days. The only people I saw were my doctors via telemedicine. My wife and sons would leave food outside the guest bedroom and knock. I was too exhausted to do anything. If I worked an hour a day, that was a lot (I’m an executive for a company that makes radioisotopes for PET scans). I watched television shows twice because I would fall asleep in the middle of them. If I walked to bathroom, I’d have to take a nap afterward.
I am better now but still easily fatigued. And my peripheral neuropathy is much worse. I had to increase my medications substantially – I take about five pills a day – but I’m working with my doctor to reduce the number again. I’ve slowly started exercising more, doing Pilates at home two or three days a week. By 8:30 p.m., I’m ready for bed, which is wen the numbness and pins-and-needles sensations happen more frequently. My bout with COVID-19 is not finished by any means, but it’s been wonderful to be home with my wife and sons.
We were a true family unit before I got infected, and this experience has only strengthened it.