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Cases of a crippling disorder that mainly affects children seem to be rising across the country, has established an unofficial investigation of NBC News.
The condition, called acute weak myelitis or AFM, appears to have been caused by a viral infection, but health officials have not been able to link cases to a specific virus. It causes symptoms ranging from muscle weakness to complete paralysis.
Health officials in 26 states tell NBC News that they have investigated or reported 85 cases of AFM.
It suddenly occurs and can cause various symptoms, including dizziness, inability to walk, problems with swallowing or problems with moving an arm. There is no specific treatment, but if children show symptoms, they need quick care, especially if there are problems with breathing, because they may need a ventilator.
From the end of September, the Centers for Disease Control and Prevention had confirmed 38 cases in 16 states. CDC did not name the states, but health officials in Colorado said they had 14 cases in 2018 and officials in Minnesota confirmed six.
Health officials from the state in 24 other states have since told NBC News that they have both suspected and confirmed cases, some of which reported after the end of September. An unofficial count based on interviews with these officers shows 33 suspected and 52 confirmed cases of acute weak myelitis, for a total of 85 probable and confirmed cases.
"There are currently two possible cases reported in 2018 that are being investigated," said Brittany Fowler, a Maryland Health Department spokesperson, to NBC News.
"We had just reported an alleged case to a grown man," said Lynn Sutfin of the Michigan Department of Public Health.
A spokesman for the CDC said the agency was not planning to release updated figures this week.
It takes time to confirm an AFM case. Viruses can cause a series of neurological symptoms and AFM is one of the rare diseases that can follow a viral infection. In order to confirm the AFM, doctors must determine whether the spinal cord is affected.
The CDC has a list of tests that must be performed to confirm a case.
"All suspected cases are sent to the CDC for assessment by their neurologists," said Lara Anton of the Texas Department of State Health Services. Texas has confirmed eight AFM cases this year.
"It takes about a month before they assess a case and determine the AFM," Anton added.
"There are currently a few cases that are not reflected in the official census of the applications, with all but one case being in Texas."
Alabama is also investigating two possible cases. "We have not yet completed our own investigations to confirm the AFM, so we have not reported to the CDC," said Sherri Davidson, Alabama's epidemiologist. "It can take a month or two because there is a lot of documentation and a panel of experts that needs to be assessed."
Health officials will never have a fixed count of AFM cases because not all states require doctors to report them.
South Carolina, for example, does not require doctors to report cases, although clusters of cases – several occurring at the same time in the same area – would be reported, said Tommy Crosby of the Department of Health and Environmental Control or DHEC.
"Providers will often consult DHEC if they suspect AFM as a complication of an infectious disease," Crosby said.
AFM is very similar to polio.
"The symptoms of the patients most closely matched complications of infection with certain viruses, including polio virus, non-polio enteroviruses, adenoviruses and the West Nile virus," says the CDC.
Other viruses have also been associated with cases, including one called EV-A71. Both EV-D68 and EV-A71 are enteroviruses and are distant relatives of polio.
New York reports an outbreak of EV-D68, with 39 reported cases, and has two suspected cases of AFM.
"EV-D68 infection usually results in mild symptoms such as runny nose, sneezing, cough, muscle pain and muscle pain," the state health service said in a statement.
"Severe symptoms, although less common, may be wheezing and breathing difficulties. In rare cases, the virus may cause acute weakness of the myelitis (AFM), a serious condition that causes weakness in the arms or legs, but there are other causes of AFM except EV-D68 and serious respiratory diseases are of greater concern with this virus. "
The virus that causes polio has been eradicated by vaccination in most countries, but regular epidemics have ever penetrated and thousands of children are paralyzed. Afghanistan and Pakistan are the only two countries where the wild polio virus has been seen this year, because conflict makes it difficult to vaccinate all children.
In the US, "the increase in AFM cases in 2014 coincided with a national outbreak of severe respiratory disease in humans caused by enterovirus D68 (EV-D68)." Of the people confirmed with AFM, CDC did not detect EV-D68 consistently. with each patient, "according to the CDC.
There are no vaccines against EV-D68 or EV-A71.
Cases and cases have fallen since 2014. The CDC reported 120 cases of AFM in 2014, 22 cases in 2015, 149 cases in 2016 and 33 cases in 2017.
"Surveillance has shown us that AFM cases generally peak during the months of September and October," said the Nevada Health Service in a bulletin sent to health care providers in August.
"A biennial pattern has been observed, with most cases reported in 2014 and 2016, and smaller numbers reported in 2015 and 2017. If this pattern continues, we would expect an increase in AFM cases in 2018."
The CDC says to wash hands regularly and thoroughly to protect against bacterial and viral infections, in general.