Frustrating diagnosis leads Strasburg resident to NYC
When Strasburg resident Kenneth Ritter travels to New York City next month, he hopes to find treatment options for a neurological condition that so far has stumped his doctors.
Diagnosed with a type of functional neurological disorder that presents with psychogenic non-epileptic seizures, he said those who haven’t witnessed his symptoms might think his complaints are figments of his imagination.
Ritter, 53, has sought treatment from various doctors, including neurologists and psychiatrists, but none have been able to detect the seizures on an electroencephalography, which he called the “gold standard” of locating electrical activity in the brain.
“Therefore, they say it’s all in your head, which means it’s psychological,” Ritter said.
Worse, he said he’s been accused of faking his symptoms.
When the seizures started in 2006, Ritter thought he was having a stroke. The right side of his body started shaking, and what he described as a tic caused one side of his mouth to droop.
A bystander told him it looked like his face was melting.
But ruling out stroke, Ritter didn’t seek medical attention at first. He thought the seizures were the release of pent up stress and other energy, until they started happening more frequently.
An emergency room doctor suggested a dissociative disorder, which she told him can manifest itself in physical forms. Since then, the counselors he’s seen have told him there must be more to the puzzle than the field of neurology is able to give them. He said he thinks they should admit they don’t know what’s going on.
“I’ve been going through this for nine years,” he said.
“You feel like no one is listening. You feel like they’re not taking you seriously.”
Feeling as if he’s the ball in a game of ping-pong, Ritter said his worst moment happened a few weeks ago on another emergency room visit.
Following a violent seizure lasting longer than five minutes, he said the doctor he saw was crass with him and nonchalant about his symptoms.
“I’m sorry, Mr. Ritter,” he recalled the doctor telling him, “but what you have does not exist, and I don’t treat what does not exist.”
“I’m done, you know? This is ridiculous,” Ritter said, thinking back over all that’s happened.
He estimates he’s spent about $50,000 looking for a solution for nearly a decade. “If I was faking it, I would have given up a long time ago,” he said.
Hoping for better treatment in New York, Ritter plans to join a five-week intensive treatment program at the Northeast Regional Epilepsy Group’s Manhattan office, with Director of Clinical Neuropsychology Lorna Myers.
The personalized program will include diagnosis and treatment, Myers explained in phone interview from New York. Relying on more than 20 years of knowledge on the subject, she said program offers very positive results.
His month in the city, April 13-May 14, could be the culmination of a journey toward a way of managing his condition, but a month in Manhattan brings its own challenges — mainly funding.
Ritter said Medicare and Medicaid should cover his medical bills, but it won’t cover housing, and he hasn’t had a job since 2010.
On disability and unable to drive because of his frequent seizures, Ritter said he set up a crowd funding page at http://www.GoFundMe.org/KenRitter, hoping to raise a little more than $5,000 to pay for the extended stay hotel where he plans to stay while receiving treatment.
The page had earned him $410 as of Friday, but he said other donations and fundraisers have brought him about $1,500. He said Mercy Medical Angels in Virginia Beach also offered to pay his airfare.
One in 100,000 suffer from a functional neurological disorder, Ritter said he learned in his studies.
He didn’t find a solution at Winchester Neurological Consultants even though he praised neurologist Dr. Paul Lyons’ ability to treat a family member with a different condition.
Treating functional neurological disorders is challenging, Lyons said, particularly if a doctor isn’t sure of the diagnosis.
Although an umbrella term used to describe many neurological conditions, it’s every bit as real as a more definitive diagnosis.
“Those are formal diagnoses,” Lyons said. “They’re real conditions.”
Symptoms of psychogenic non-epileptic seizures can be indistinguishable from those of epileptic seizures, but treatments require more information because they can be harmful if used on the wrong condition.
Though not particularly common, Lyons said non-epileptic symptoms are not rare.
Children can have seizures unrelated to epilepsy or a psychogenic condition, and he said other medical conditions like Tourette syndrome and autism can provoke the onset of seizures.
Ritter said he’s been tested for Tourette syndrome. In 2004, he was diagnosed with celiac disease — an autoimmune disorder that causes damage to the small intestine when the patient ingests gluten, found in wheat — and he said the disease might correlate to his seizures.
He recalled one time at a party when he ate food he later learned had been soaked in beer.
“Within 15 minutes, I was enraptured in a seizure and spent the night in the hospital,” he said.
The National Institute of Health describes on its website at http://preview.tinyurl.com/mv7vsal reports of celiac relating to conditions like neuropathy (nerve damage) and seizure disorder, and the site said screening for celiac should be considered in patients with unexplained neurological disorders, including ataxia (which causes coordination problems) and dementia.
However, Lyons said he hasn’t witnessed a strong correlation between celiac and seizures among his patients.
In searching for a solution, Ritter found support online through the website http://www.fndhope.org, which educates on functional neurological disorder and explains options to visitors frustrated with their diagnosis.
“We’re trying to get the word out about this because it’s not very well-known,” Ritter said. “We’re trying to educate the public as well as other doctors about this condition.”
Contact staff writer Josette Keelor at 540-465-5137 ext. 176, or firstname.lastname@example.org