The Foundation for Peripheral Neuropathy asked Dr. Shanna Patterson and Dr. Rory Abrams, FPN’s Patient Education Advisors, what they are seeing in relation to neurological symptoms following COVID-19. The doctors shared the following information.
What do we know about COVID-19?
COVID-19 disease caused by the SARS-CoV-2 virus was first described in December 2019 in Wuhan, China, but has since spread globally at a rapid rate. While the number of cases and the mortalities grab much of the attention in the media, less focus is paid to the long-term toll taken on by those who survived this disease. Since its discovery, there have been ever increasing reports associating SARS-CoV-2 infection with various disorders of the nervous system. These disorders can be broken down into processes that affect the brain and spinal cord that comprise the central nervous system or CNS, and those that affect the peripheral nervous system or PNS.
Scientists and doctors are learning more each day about the spectrum of neuromuscular disorders that develop in the wake of COVID-19 disease. It will take time to fully understand the scope and scale of the residual impact in those recovering from this disease. There is now growing literature suggesting that COVID-19 may be associated with meningitis (brain inflammation), myelitis (spinal cord inflammation), Guillain-Barré syndrome (a type of acute auto-immune neuropathy), and CNS vasculitis (blood vessel inflammation) to name a few broad neurologic disorders. What these disorders seem to have in common is that they are caused by an inflammatory surge to fight off the infection rather than a direct infection from the virus itself.
Neurologic Symptoms in COVID-19 patients
The most common neurologic symptom reported is loss of smell, which may occur early in the disease process. Loss of smell, which may also impact the sense of taste, is thought to be temporary and it is felt that most people recover their sense of smell over time. Some of the latest research would indicate that this is because of inflammatory changes affecting not the olfactory neurons (which receive and transmit odors from the nose to the brain), but rather the support cells that lead to a healthy nasal mucosa and healthy olfactory neurons. Aside from waiting, there is no definite treatment to help recover the sense of smell, but some have suggested that taking oral omega-3 supplements or using intranasal vitamin A may help speed recovery.
Guillain-Barré syndrome is an inflammatory disorder affecting the peripheral nerves and the nerve roots that can lead to generalized muscle weakness, numbness, walking problems, and in severe cases affect breathing, blood pressure, and the gastrointestinal system. Prior to COVID-19, Guillain-Barré syndrome had been linked to an inflammatory response as a result of several infections, including Campylobacter jejuni, Lyme disease, EBV, HIV, and Zika virus, to name a few. Almost expectedly, there are now many reports of Guillain-Barré syndrome occurring during the acute illness from SARS-CoV-2 infection and within the weeks following recovery. Fortunately, should this happen it seems that the standard treatments for Guillain-Barré syndrome are seen to be beneficial, and most patients recover very well over time and with physical therapy.
Much more commonly, however, we are seeing many patients in our practices complain of mild but still disabling muscle weakness, fatigue, and numbness or tingling following COVID-19 disease. When we see these patients, we often recommend a series of standard tests looking for neuropathy or myopathy. Checking certain blood tests is important to identify other causes of neuropathy that may be contributing to these symptoms, such as vitamin deficiencies or metabolic derangements such as diabetes. Nerve conduction studies and electromyography (EMG) testing may be performed to characterize the presence of a neuropathy. Making a formal diagnosis is challenging in many of these patients, however, because the nerve conduction studies and EMG are often normal relative to the standard reference values in our experience. In addition, skin biopsies which look for evidence of damage to or loss of the small nerve fiber endings in the skin are often normal as well, though there have been no formal rigorous studies yet to confirm this.
While we are also anecdotally seeing a major uptick in people reporting new or worsening of their headaches or migraines following COVID-19 disease, these symptoms seem to improve with time and with traditional recommendations for headache. Probably, the most debilitating symptoms reported by patients is the overall feeling of fatigue, mental fog, and quantifiable weight loss in the weeks and months following the infection. Especially among people who live in New York City where we practice, the daily stresses of life can be overwhelming on a good day. Many people who had COVID-19 are now reeling from this major drain on both their physical and mental energy. This is compounded by the overall level of physical deconditioning that many New Yorkers are facing by quarantining indoors the past six months, from the closure of most gyms, and the inability to engage in many other physical activities. Unfortunately, there has yet to be a label applied to this condition, no clear diagnostic tests, and no definitive treatments identified.
Peripheral Neuropathy and COVID-19
Neuropathic pain is not an uncommon post-Covid symptom. However, we don’t have definite evidence to prove that the worsening of the neuropathy symptoms is really from peripheral neuropathy – or neuropathy like symptoms coming from problems with the brain or spinal cord. Anecdotally some patients with these symptoms show no large or small fiber neuropathy on EMG and skin biopsies. The symptom management however is similar, and we again expect to learn more with time.
(You can read an article written by FPN’s Board Member that appeared in Brain and Life magazine tells his journey with COVID-19 and peripheral neuropathy.)
What can patients do?
Perhaps the most important message we share with these patients is for them to know that they are not alone in dealing with these symptoms. While we may be seeing multiple patients on the same day with these symptoms just because SARS-CoV-2 was so prevalent in New York, we would expect people anywhere in the world to be dealing with these symptoms. The good news is that while again anecdotal, we have noticed these symptoms in patients tend to improve with time. It is important for these individuals to learn to be patient with themselves and know their physical limitations. Maintaining a healthy diet, engaging in some form of mild-moderate exercise, controlling stress, and getting good rest and sleep are potentially key to augmenting recovery as well.
As an added note:
We don’t know the full range of how long post-Covid symptoms take to improve and it will take some time to have a more definitive idea of the full range of time for recovery, or to know for certain if some have symptoms that are permanent. However, for post-Covid neurological symptoms many patient do seem to experience significant improvement, if not full resolution, within several months.
Mount Sinai’s Precision Recovery program actually offers patients a way to enroll and have their post-Covid symptoms monitored remotely by a team of specialists.