New diagnosis for MS advocate
Neurologists offer hope condition will improve
Deanna Kirkpatrick, an East Wenatchee, Wash., woman whose podcasts about living with multiple sclerosis have reached thousands of listeners around the world, no longer has MS.
Or rather, she never did, according to a “dream team” of three Seattle neurologists she assembled in response to her nagging suspicions that she didn’t quite fit into the MS category. Kirkpatrick’s advocacy efforts were featured recently in an article in The Spokesman-Review.
Doctors believe a virus caused her body to turn against itself, attacking her brain and spinal cord and causing the neurological damage that caused chronic nerve pain and exhaustion for the past seven years. She no longer meets the criteria for an MS diagnosis, Kirkpatrick said Friday.
She has encephalomyelopathy, a term referring to any disease that affects the brain and spinal cord.
“It means they don’t know what the hell I have,” she said, laughing.
They might never know exactly. But Kirkpatrick and her doctors are confident she doesn’t have multiple sclerosis, she said. Some of the lesions in her spinal cord have healed, she said, which would not happen in an MS patient.
There’s no cure for MS. Kirkpatrick, 45, expected her condition to progressively worsen for the rest of her life. But after her initial attack, it turns out, there’s been no further damage to her brain, which you’d typically see in an MS patient, she said. Now she’s hopeful she can get better, using physical therapy, pain management and nutrition to regain some of the energy and mobility she’s lost.
“It’s going to take baby steps,” she said.
Wiped out by her condition, Kirkpatrick has spent as much as 80 percent of her time in bed or in a recliner. She lost her job in pharmaceutical sales and then her Seattle-area home, moving to be near her parents in East Wenatchee. She spent much of her scarce energy working as an online advocate for MS patients, helping to launch the “Multiple Sclerosis – Unplugged” podcast series and reaching out to fellow patients using social media.
A Seattle radio personality before she moved into pharmaceutical sales, Kirkpatrick uses the podcasts to ask questions of doctors, researchers and others that could help other patients make their own medical decisions.
Her case is rare. Most people diagnosed with MS really have it.
But, she said, “if anything, my story will maybe help others who don’t feel like they quite fit into the MS box and maybe will help them ask further questions and do further investigation into their own case.”
Her symptoms remain similar to those of many MS patients. She said she’ll continue her advocacy efforts. “I’ve been living with MS for seven years,” she said. “That’s my life.”