Long distance drivers in the Lansing area say they are misdiagnosed too often
LANSING, me. – Kelsey Snyder is 24. She was healthy until a few months ago. Now she relies on nutritional supplements to treat symptoms that have lingered months after contracting COVID-19.
“I got COVID on December 20, 2020,” she said. “My husband had symptoms three days before I started showing symptoms and then I got a cold or maybe a sinus infection on the 20th. I recovered, then came in late March and symptoms hit me out of nowhere.”
Kelsey is experiencing what many long-distance COVID drivers experience: postural orthostatic tachycardia, a circulatory disorder often abbreviated as POTS.
Your symptoms are dizziness, extreme tiredness, and the inability to move. It’s symptoms, Kelsey says, that mid-Michigan doctors have found difficult to identify.
“I went to the emergency room twice. Both times they just said ‘scared’,” she said. “Then it got worse and worse.”
“I don’t know if you’re on any of those Facebook groups, but everyone at the beginning of their story says, ‘I got short of breath and went to the doctors and they just said it was scared.'” She added.
“It’s not just me, it’s not just Michigan, there are people everywhere.”
One of the groups Kelsey is referring to is Michigan COVID-19 Long Haulers, where many members describe the same struggles.
A woman named Susan who writes; “As a long distance rider in Michigan, I am so disappointed with the lack of care for those who have had severe COVID illness but have not been in intensive care or have been intubated. Therefore, I cannot seek care at the U of M Long COVID Care Center. I had to drive 180 miles to the Cleveland Clinic. “
Long-distance COVID drivers feel that their illness is being written off.
Dr. Michael Zaroukian, Vice President and Chief Medical Information Officer at Sparrow Health System, admits that many long-distance drivers are initially misdiagnosed.
“When symptoms seem medically unexplained, we are sometimes too vulnerable to attribute them to stress or anxiety rather than a COVID pathology,” said Zaroukian. “Even in an area like this where we’ve had a lot and talked a lot, there is still a tendency to underestimate the ability of COVID to cause persistent symptoms in many cases. And that is truly unfortunate, patients. We continue to work hard at making sure our providers are aware of symptoms that are otherwise unexplained but are followed by COVID. “
A recent study by the University of Washington shows that many long-distance COVID drivers like Snyder originally only had mild COVID cases.
There are no specific data from Michigan, according to Zaroukian, but anywhere between a quarter and a third of the COVID patients who come through Sparrow may be long-distance COVID patients with symptoms that last for 12 weeks or more.
“And sometimes they’re minor and sometimes they’re more severe,” he said.
There are clinics in Ann Arbor and Detroit specially set up for long-haul COVID patients, but there are no long-haul clinics in mid-Michigan for more than a year after the pandemic started.
“Finding an actual clinic near me just feels impossible right now,” said Snyder.
When asked if Sparrow is discussing plans for a long-range COVID clinic, Zaroukian replied, “It’s on our radar screen to monitor you.”
“I think the indicator of whether it is time for us to build such a multidisciplinary clinic is likely to be how many patients we see that we otherwise have to go to one of these other places like Ann Arbor. If so . ” became more than an occasional need, we would certainly want to consider that, “he said.
Those in trouble like Snyder ask for at least one consideration.
“The doctors are doing their best and I obviously appreciate everything they do,” she said, “but it’s really important that people take this extra time to listen to people who say this is going on.”
The CDC recognizes that clinicians and researchers are still at the early stages of understanding long-term COVID.
There are multi-year studies that researchers are currently in the midst of which they say are critical to patient care.
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