Wednesday, 9 September 2020

COVID-19 And Neuropathy - A Podcast And Personal Account To Clear Some Of The Confusion

Today's post/podcast from NeuropathyCommons.org (see link below) is a very useful question and answer discussion about what is currently known about the relationship between neuropathy and Covid-19. You get to hear the views of an neuropathy expert and neurologist and what she has to say may well clear up some of the issues that have been troubling you during the current pandemic. We're all learning about the potential effects of Covid on neuropathic problems, pretty much as they develop - it's that new! Does neuropathy itself put you at greater risk from the virus for instance?...definitely worth a listen (click on the green arrow on the podcast).

 

The NeuropathyCommons Podcast

NEW! The NeuropathyCommons Podcast brings together experts to discuss current topics of interest to patients dealing with peripheral neuropathy. Learn about the latest research and more, from neurologists and scientists working in the field.


Episode 1. COVID-19 and Neuropathy


In the first episode of the NeuropathyCommons Podcasts, your host Dr. Alex Chamessian chats with Dr. Anne Louise Oaklander, a leading expert on peripheral neuropathy and founder of NeuropathyCommons.org. Learn about this website for patients, and listen to their discussion about neuropathy in the time of a pandemic. What do neuropathy patients need to know about the nerve disease and COVID-19?





Note: In the podcast, Dr. Chamessian and Dr. Oaklander discuss a new report on how the Sars-CoV-2 virus might enter nerve cells. Follow the link below to access the preprint. This paper has now been accepted for publication in the peer-reviewed journal PAIN. 
 ACE2 expression in human dorsal root ganglion sensory neurons: implications for SARS-CoV-2 virus-induced neurological effects(link is external).
 Shiers S, Ray PR, Wangzhou A, Esteves Tatsui C, Rhines L, Li Y, Uhelski ML, Dougherty PM, Price TJ. bioRxiv. May 29, 2020. 

As a bonus, below is a personal account of a neuropathy patient's experience of having Covid-19 along with her neuropathy problems - definitely worth a read - other people's experiences can only prepare us for what we may later experience for ourselves.


A Small-Fiber Polyneuropathy Patient Shares Her COVID-19 Experience


I have small-fiber polyneuropathy and am a patient of Dr. Oaklander. I am in my twenties and was on high dose steroids for more than a year, but am currently not on any immunosuppressants.

I had COVID-19. The threat of getting a sickness about which so little is known, when I already have a rare neurologic disease, felt very scary. I want to talk about my experience, and also share some practical things I did while I was sick that helped me feel better. I also want to emphasize that while this sickness was scary to have, I am okay!

What it felt like

 
Three weeks ago, I started showing signs of COVID-19. It began as a sore throat. I had a runny nose, so I did not think much about it. The next day I suddenly lost my sense of taste and smell. Everything tasted dull or kind of sour. The following morning, I woke up with a mild fever. I started to quarantine in my bedroom. As the days progressed, my fever persisted, and I began to have intense body aches.

After four or five days of symptoms, my sore throat felt like it was sinking down into my chest. I started to cough, a very dry cough. It hurt intensely each time I coughed.

With the cough came a strange chest tightness. My ribs ached. My lungs felt tight and raspy. I could not take a full deep breath in. The entire time I was actually getting enough air, and had good oxygen levels in my blood, but it felt as though my lungs could not take the air in, almost as if I were drowning. I have never before experienced such a sensation.

Days six and seven were the days I felt scared, but then I started to feel better. My fever and the worst of the pain in my lungs went away. The chest tightness and cough slowly started to improve after that. I am now basically back to full health, although some aches continue, and my lungs hurt if I walk for too long outside.

Throughout my sickness, I was definitely worried that my small-fiber polyneuropathy would flare. But so far, I have not experienced any neurological symptoms.

What helped 

 
1. I was quarantined for 10 days in my room. There are two bathrooms in my house, so I was able to have my own bathroom. My roommates brought me meals. One of my roommates would wash all the dishes with gloves on at the end of the day. These precautions felt extreme, but none of my roommates got sick.

2. I drank a ridiculous amount of water and tea throughout the sickness. I got myself an electric tea kettle to keep in my room, so that I could make myself tea anytime. I also kept snacks in my room so that whenever I felt hungry, I could eat. I made sure that, even though my sense of taste and appetite was off, I was still eating enough.

3. When my chest would hurt a lot, I would rub my chest and neck with Vicks® VapoRub™ and then use a heating pad. I would then take slow gentle breaths. This helped a lot!

4. I had a few people I would FaceTime with regularly during the days. This was important. Even when my lungs felt very painful and short of breath, I was still able to carry on a conversation. This helped me know I was getting enough oxygen. Also, having people around, even virtually, made me feel less isolated.
Additional Resources for Neurology Patients

For trusted information on the pandemic, visit the American Academy of Neurology’s Brain&Life COVID-19 (Coronavirus) and Neurologic Disease Resource Center.(link is external)

 

https://neuropathycommons.org/media/neuropathycommons-podcast

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