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Ed and Nancy Garber have been married for 49 years, but together for much longer than that.
“Since high school,” Nancy says. “We’re high school sweethearts.”
With a relationship that deep, it should come as no surprise that Nancy was the first to notice a change in Ed’s health. “In the spring of 2020, I noticed Ed was a little quieter than normal,” she says. “He was also tired and having difficulty with his right arm. His elbow was bothering him. He just thought it was carpal tunnel (syndrome).”
When Ed began experiencing additional symptoms during a family trip to Boston a few weeks later, Nancy knew it wasn’t just carpal tunnel. “Looking back, it was probably his first seizure,” she says of the health event that happened to Ed early one morning in Boston. “We didn’t realize it at the time because it looked more like a stroke or a panic attack. He had a lot of anxiety at the time, and he’d started making references to people who weren’t there.”
At that point, Nancy took Ed to a local hospital. “They kept him for four days and did a very extensive panel of tests, but they did not test for autoimmune encephalitis at that time even though they did perform a lumbar puncture,” Nancy says. “They were more concerned about him having Lyme disease.”
At the end of those four days, Ed was cleared of having Lyme disease, and instead diagnosed with a mild form of dementia and sent home with instructions to ask his primary care physician for a referral to a neurologist so that he could have a complete neurological assessment.
Ed and Nancy Garber
“We went to see his primary care physician and he referred us to a neurologist within the same hospital system in Charlotte, North Carolina, where we live,” Nancy says. “That neurologist performed a basic cognitive test and diagnosed Ed with mild cognitive impairment, sent us home, and told us to come back in six months.”
Over those next few months, Ed’s health continued to decline.
“HE STARTED GETTING WORSE,” NANCY SAYS. “HIS RIGHT ARM STARTED TWITCHING FREQUENTLY, HIS FACE STARTED TWITCHING. WE’D GO FOR A WALK TOGETHER AND HE WOULDN’T LET GO OF MY HAND.
Normally, he’d only hold my hand for a few seconds before letting go, but now he was squeezing tight and not letting go.”
Back at home, Ed also began sleeping more during the day. “His head would randomly fall back on the sofa, and he’d just fall asleep,” Nancy says. “He started biting his lip when he was eating and flailing his arms in bed at night and acting out his dreams. He also started getting up in the middle of the night and wandering around the house. When we’d go out to a restaurant, he’d ask about our grandkids as though they were with us.”
Though he’d retired from his career as a computer technician, Nancy says Ed also began acting like he was back at work again. “He began putting papers in a briefcase and working on our phones and computers at home like he was back in the office,” she says.
As Ed’s symptoms continued to progress, a friend gave Nancy some advice. “She’s very connected in our community and she told me to try taking Ed to Memory & Movement Charlotte, so I called and made an appointment,” Nancy says. “At that point, Ed’s symptoms were mostly psychiatric, but he was having some movement issues, too.”
“Dr. Iyer and his team continued to test for everything,” Nancy says. “They didn’t leave a single stone unturned because they didn’t want to treat Ed for something he didn’t have and potentially make things worse, even though they acknowledged the wait was frustrating.”
While his care team continued searching for answers, Ed’s condition continued to worsen.
“We went on a hike one day and half-way through the hike, Ed started leaning back and I had to support his back the entire way off the trail,” Nancy says. “A few days later, he fell backwards down a staircase at home. I then had to put up baby gates in our two-story house to discourage Ed from going up and down the stairs.”
It was at that point that Nancy made the difficult decision to move her and Ed out of their house and into a one-story apartment for Ed’s own safety. “I have a background in real estate so I got the house ready to sell and hired an agent who sold it so we could move into a 55-and-older one-story rental unit,” Nancy says.
Just one week after moving into their new home, it became clear to Nancy that she needed help caring for Ed. “I wasn’t getting any sleep because he was falling and I was worried that he was going to get out of bed at night and leave the apartment,” she says. “So, I hired someone to help me.”
A few days after their new in-home caregiver joined Ed’s care team, she, Nancy, and Ed went in for a follow-up appointment with his primary care provider for low sodium levels. “Ed was shaking that whole day,” Nancy says. “He just wasn’t normal.”
Shortly after returning home, Ed’s health took a turn for the worse. “He was laying in the recliner and had a grand mal seizure,” Nancy says. “I called 911 while the caregiver attended to Ed on the floor.”
Before the seizure, Dr. Iyer and his physician assistant Robyn Wolkossky had asked Nancy if they could record a video of Ed to share with colleagues around the country who might be able to help them make a definitive diagnosis. “Dr. Iyer and Robyn also recorded an extensive health history about Ed and as it turns out, after seeing the footage, the same day that Ed was hospitalized for the seizure, one of Dr. Iyer’s colleagues said he had treated a patient with similar symptoms a few weeks earlier,” Nancy says.
That patient was ultimately found to have leucine-rich glioma inactivated protein-1 (LGI1) autoimmune encephalitis, a rare neurological condition that’s often accompanied by memory loss, behavioral disturbances, and seizures — all symptoms that Ed had been experiencing for months.
“It was then that they started suspecting Ed was also suffering from LGI1 autoimmune encephalitis, so Dr. Iyer ordered the hospital to send a cerebrospinal fluid sample to Mayo Clinic Laboratories for testing,” Nancy says.
Long recognized as a world leader in the diagnosis and treatment of autoimmune neurologic disorders, Mayo Clinic Laboratories offers specialized and targeted testing for a range of autoimmune neurologic conditions, including autoimmune encephalitis. As the reference laboratory of Mayo Clinic, Mayo Clinic Laboratories’ autoimmune neurology assays are backed by Mayo Clinic expertise and incorporate all antibodies pertinent to autoimmune encephalitis.
“THESE ANTIBODIES NOT ONLY HELP US WITH DIAGNOSIS, THEY ALSO PROVIDE US CRUCIAL INFORMATION ABOUT HOW TO TREAT THESE PATIENTS,” SAYS DIVYANSHU DUBEY, M.B.B.S., A CLINICAL BIOCHEMIST AND NEUROLOGIST IN MAYO CLINIC’S CLINICAL NEUROIMMUNOLOGY LABORATORY. “THEY DON’T JUST GIVE US A DIAGNOSIS, BUT A PATH TO TREATMENT.”
In Ed’s case, test results from Mayo Clinic Laboratories did confirm what Dr. Iyer and others had suspected: Ed had been suffering from LGI1 autoimmune encephalitis the entire time.
After confirming the diagnosis, Ed was put on a treatment plan while still in the hospital that had him sitting up, eating, and, largely back to his old self in a matter of just a few days. “It was miraculous,” Nancy says.
Ed and Nancy Garber
And for all that he went through, Ed says he feels fortunate to have gotten a correct diagnosis when he did. “Because the symptoms can mimic other conditions, a lot of autoimmune encephalitis patients don’t get a diagnosis or a specific gene they can relate it to,” Ed says. “I lost a year of memories while all of this was going on, but other than that I’m doing very well. For now, I’m still on anti-seizure medication and semi-annual immunosuppressant infusions, but I don’t have any lingering problems or pain. I feel like a pretty normal guy again.”
And because of that, Ed’s now doing what he can to help others.
“We’ve joined the Autoimmune Encephalitis Alliance, a national organization that provides education and support about the illness and they’ve been a wonderful help to us,” Nancy says. “Ed’s become very active in the organization’s support group by providing encouragement and leadership to others as someone who’s been through it and is now doing well.”
You can learn more about autoimmune neurology testing from Mayo Clinic Laboratories here.