AMARILLO, TX (KFDA) – An Amarillo man is sharing his story of his diagnosed with Acute Flaccid Myelitis, known as the polio-like illness, and his eventual recovery.
According to the CDC, Acute Flaccid Myelitis has occurred in 25 states this year, with 80 confirmed cases of AFM.
The CDC has seen an increase of confirmed cases since 2014, when it affected 120 people.
Amarillo’s Ryan Turner was 30-years-old when he was diagnosed with AFM.
“If the doctors would have known, if I would of gotten the right treatment sooner on, early on, then I wouldn’t have suffered as much, I don’t think,” said Turner. “I think we could’ve limited the damage and the time that I was in really bad condition.”
In December of 2014, Turner was sneezing, coughing and feeling sick. With a runny nose and fatigue, he was thought to have a severe case of the flu and a sinus infection. Eventually, the antibiotics kicked in and Ryan went back to work.
It wasn’t until a week later that the nerves on Ryan’s spinal cord would be damaged indefinitely.
“And on Monday I woke up and I had double vision and I felt horrible. My legs felt really heavy. It was really weird,” said Turner. “So my wife talked me into going to the emergency room. So we went to the ER and they got me in pretty quick, and they were like, ‘Well you’re probably just having post-flu symptoms and here’s some nausea medication and call back if you need to,’” said Turner.
Later in the evening, Turner continued to have double vision, vomiting and could not produce urine. He went back to the hospital and was told that he was still recovering from the flu and was sent home.
“When we left this time, he was even less coherent than he was before,” said Ryan’s wife, Lori Turner. “And I just turned around there at the door step and I said, ‘Turn around. We’re going back. Something is wrong.’ I just had a feeling that something was not right.”
Ryan was admitted to the hospital at 2:00 a.m., and within two hours, he was paralyzed from the chest down.
“By the time that his primary care physician came in, he came in and was like, ‘So I hear you are having post-flu symptoms. Do you have a stomach bug?’ and I remember I was throwing my hands up and I was like, ‘No, that is not what’s going on. Please go back and check and see what’s going on with him.’ By this point he was numb and paralyzed from his chest down. I said, “This is not post-flu,” said Lori Turner.
“[The doctor] came back a little while later and was like, ‘Well I think you have Guillain – Barre syndrome.’ So they did MRI’s and spinal taps and they tested me for everything possible,” said Ryan Turner.
The MRI presented spinal cord lesions in the gray matter. The CDC classifies spinal cord lesions in the gray matter as evidence for AFM.
According to the CDC, AFM is a rare but serious condition that affects the nervous system. Symptoms of AFM include difficulty moving the eyes or drooping eyelids, facial droop or weakness, difficulty swallowing or slurred speech and sudden arm or leg weakness. Dr. Douglas E. Lewis, neurologist at BSA Amarillo Diagnostic Clinic, did not treat Ryan Turner but studies the disease.
“AFM is described as, is a reduction in the reflexes, with the weakness,” said Dr. Lewis. “So what that means by a reduction of the reflexes is that the lesion, or the disease is happening at a peripheral nerve level, which in this case in the gray matter, of the spinal cord.”
Both of Ryan’s doctors didn’t see the lesions, causing them to misdiagnose him.
“It’s common to be misdiagnosed,” said Lori Turner. “He said at the time though that he wasn’t able to start treatment on Ryan without a neurological doctor. ”
Ryan was incoherent and paralyzed waiting to be seen by a neurologist. Over two days went by and he was unable to get treatment.
“But I remember crying and saying ‘My husband is in the hospital two and a half days and we still don’t have a neurologist,” said Lori Turner.
“It is very time sensitive, you need to get right to your physician when you start having these symptoms,” said Dr. Lewis. “Because there’s not a lot that you can do. If you had a lot of complications, like respiratory difficulties, you need to be somewhere that you can be treated.”
It wasn’t until Christmas Eve that Ryan’s charts were examined by a neurologist.
“It seemed like two days before a neurologist came to see me, and he checked me out and said, ‘Yeah we need to get you to the neurological intensive care unit and start giving you this IVIG medication.’ So they took me up and they gave me the first dose immediately, and by the end of that dose I can finally start wiggling my toes again,” said Ryan Turner.
After five days of treatment, Ryan was able to walk with a walker, and by New Year’s Day, he was sent home.
A few days later, he was readmitted to the hospital for an ongoing fever and the return of double vision.
“And [the doctors] re-did the MRIs. This time they saw, like the doctor came in the middle of the night and said, ‘I just looked at the MRI and you have lesions on your brain stem, and on your spinal cord, which means that you have Transverse Myelitis,’” said Ryan Turner.
“But we started the steroids and he improved,” said Lori Turner. “And the fever went away and he was cleared for OT and PT, and I began working on getting him to be seen by Dr. Greenberg.”
“So we finally got to go see Dr. Greenberg, and he spent about two hours with me. And he said, ‘I think you have Acute Flaccid Myelitis, which is a subversion of Transverse Myelitis and we don’t know what causes it, but we know that it damaged your brain cell and your spinal cord,’” said Ryan Turner.
“The idea is that it’s a virus or an environmental toxin that is setting it off or at least starting the condition, but we have not been able to diagnose exactly what the cause is at this point in time,” said Dr. Lewis.
Four years later, and the Acute Flaccid Myelitis has not reoccurred. Although Ryan’s spinal cord was damaged, he was able to go back to his normal way of life. As a son, father and husband, Ryan is grateful that he recovered from the illness.
If you would like to learn more about Acute Flaccid Myelitis, this video discusses the rare neurological illness:
What is Acute Flaccid Myelitis?
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