For Walter Beresford, whose job it is to seek perfection, not having his body work exactly like he wants came as a huge surprise.
Beresford, 62, is a quality control inspector for NASA and commercial space programs in Honeywell’s electronics inspection group in Glendale. He was always robust and seldom sick, even in his younger years during his globetrotting service in the Army.
So, he clearly remembers the first time his body failed to respond to what his brain intended.
Ten years ago, while at work, a co-worker did something goofy and Beresford tried to give him an ironic double thumbs up, only his left thumb hardly moved.
“I looked over at him and gave him what I intended to be two thumbs up. He goes, ‘What is that? One and a half?’ I looked and the left thumb didn’t come up,” he said.
Mystified, Beresford sought out a hand specialist, which led him to a neurologist, who led him to Dr. Todd Levine, Research Division Director of the Neurological Research Division at HonorHealth Research Institute, who in a matter of minutes diagnosed Beresford with an extremely rare condition called Multifocal Motor Neuropathy (MMN).
What is Multifocal Motor Neuropathy?
MMN is a disease that affects the nerves that control muscles. The condition makes it difficult for neurons to send the electrical signals that move your body, leading to weakness, twitches and cramps, especially in the arms and legs.
In MMN, the immune system mistakenly attacks the nerve cells as if they were invaders. There is no known cause, and symptoms progress with age, though they can be slowed, and even reversed, though IVIg, intravenous immunoglobulin, a mix of antibodies used to treat a variety of immune system disorders.
IVIg, which takes hours to infuse, is derived from common blood plasma but carries a decidedly uncommon expense, costing as much as $30,000 a month. As a result, some insurance companies require patients to first exhaust other treatment options, and then continually require documentation of the drug’s need.
A natural skeptic, Beresford at first didn’t fully trust Dr. Lavine’s diagnosis, coming after only about 15 minutes of examining his hand and reading his charts.
But when he sought a second opinion from another neurologist, the doctor said, “You saw Dr. Todd Levine? You know he’s the top guy in Arizona!”
“I had no idea,” said Beresford, who returned to Dr. Levine and began infusions of IVIg: “The next day, it was the weirdest thing. When the nurse said, ‘How ya doin?’ Both thumbs came up!”
Still, over time, Beresford’s condition worsened, developing weakness in his left wrist, shoulder and leg. He noticed that he kept nicking himself while cutting vegetables, finally realizing that his left thumb was not following his brain’s instructions to get out of the way of the knife.
Last year, Dr. Levine identified Beresford as a good candidate for a clinical trial of one of the few alternatives to IVIg, an experimental drug known as ARGX-117, a targeted immune-suppressant originally developed for other medical conditions. Beresford no longer has to worry about losing insurance coverage, since the clinical trial is free.
The study involves 48 patients at multiple sites. It’s a randomized, double-blind, parallel group test to evaluate the safety and effectiveness of the experimental drug versus a placebo. So, while Beresford isn’t supposed to know if he got the drug or the placebo, he says he definitely knows — he’s getting his strength and movement back.
Helping his stepson, a disabled veteran
He recently visited his stepson in Idaho, a disabled veteran who lost both legs in a bombing but has become a USA paralympic standout in four sports, including ice hockey.
“If it were not for the treatments, there’s no way I could have been doing all the stuff that he needed done,” he said, including tearing out sod, hauling rock, laying base material – even digging out rose bushes. “Thanks to the treatments I’ve gone from barely being able to care for the grandkids to being able to go outside and shovel, load, haul — I did it for two weeks.”
Beresford’s hope for the future is that this new drug gets FDA approval, his strength stabilizes, and he maybe gets even stronger.
“My hope is that if this medication is approved, they find a dosage window that works for me,” he said. “If I only have to go to the doctor, or go to an infusion center, every six weeks, and have this good of results, I’d be one happy camper.”
Beresford has advice for others who suffer medical challenges: “Even if you are receiving treatment, there’s always a chance that there is something better. If people don’t volunteer for the clinical trials, then we will not make any advancement — we will not learn more — and future generations will have to suffer through the same slow processes that we do now.”
