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Advanced Treatment for Rare CIDP Nerve Disease

Ron Reidlinger

November 21, 2019

A career in farming demands strength, stamina and a degree of fitness. Those are qualities Ron Reidlinger took for granted until he was in his early 40s. Ron and his brother work 1,500 acres of corn, soybeans and livestock near the rural town of Darlington, Missouri. Farming is in his blood, and Ron never considered doing anything else.

His symptoms seemed fairly innocent at first. In 2007 Ron noticed numbness in his pinky finger and in spots on his feet. Slowly, other fingers began to feel numb.

"Then, I was pumping fuel into a tractor one day and noticed I couldn't walk quite right," Ron recalls. "Balance was also becoming an issue. It didn't seem like a big hindrance at the time, but I knew something wasn't right."

Ron's path to diagnosis and treatment for chronic inflammatory demyelinating polyneuropathy (CIDP), an autoimmune disease affecting fewer than 30,000 people in the United States, was long and complicated. It ended at The University of Kansas Health System, among just 30 centers of excellence in the nation identified by the CIDP Foundation International.

Peripheral neuropathy is the most common condition most people have never heard of. Only about 1 in 1,000 people with peripheral neuropathy has CIDP, making it a 'needle in a haystack' diagnosis. – Mazen Dimachkie, MD

A long search

Ron's symptoms indicated a problem with his nerves, especially those in his hands and feet. Physicians refer to this type of numbness, tingling or pain as peripheral neuropathy. It is associated with a variety of chronic and acute conditions and affects about 40 million Americans.

"Peripheral neuropathy is the most common condition most people have never heard of," says Mazen Dimachkie, MD, a neuromuscular disease specialist with The University of Kansas Health System. "Only about 1 in 1,000 people with peripheral neuropathy has CIDP, making it a 'needle in a haystack' diagnosis."

In 2009, Ron's diagnostic journey began as most people's do, with a visit to his primary care physician. She mentioned that multiple sclerosis could be a possibility and sent Ron to a neurologist. Neurological tests failed to confirm a multiple sclerosis diagnosis, and the cause of Ron's symptoms remained a mystery.

"I went to a chiropractor in 2010 because I thought maybe I had a pinched nerve, and he recommended I see another neurologist," Ron says. Seeking answers, Ron took his chiropractor's advice. Yet further tests revealed only the early stages of age-related arthritis.

It was time to dig deeper. Ron contacted a reputable healthcare facility several states away. It took a year for him to get an appointment there since his symptoms weren't considered an emergency. By this time, Ron had been living with slowly worsening symptoms for almost 5 years. While he waited to hear back about an appointment, Ron went to a 3rd neurologist who told him he could have amyotrophic lateral sclerosis (ALS), an incurable progressive disease that weakens muscles.

"I thought, 'You've got to be kidding me!'" Ron recalls. "That was about the time the other facility called and said they could schedule me for an appointment."

Ron underwent a full week of tests and was relieved when ALS was ruled out. However, the cause of Ron's condition still wasn’t clear.

"They thought maybe I had a movement disorder, so they put me on a drug used for Parkinson's disease," Ron says. However, the medicine didn't help, and Ron still had no answer. Discouraged, Ron returned to his initial neurologist.

"I was finally referred to The University of Kansas Health System and Dr. Dimachkie," Ron says. "And that's who figured it all out."

Dr. Dimachkie put a name on my condition and told me we could treat it. It was an incredible relief. – Ron Reidlinger

Expert knowledge leads to diagnosis

Drawing upon his years of experience as a physician and researcher, Dr. Dimachkie reviewed the reams of medical records and test results that Ron presented.

"He couldn't believe how many doctors I'd seen and all the tests I'd had," Ron says.

To come to a diagnosis, Dr. Dimachkie and his team always begin by creating a complete clinical picture of the patient's condition. CIDP symptoms include both peripheral neuropathy and muscle weakness, a combination not often seen in more common diseases. For those with CIDP, weakness is particularly evident in the joints near the torso, such as shoulders and hips, causing difficulty climbing stairs, rising from a seated position or walking with a normal gait.

"We ask the patient questions to determine exactly what he's experiencing and then confirm those symptoms with a physical exam that includes strength testing to measure the extent of weakness," Dr. Dimachkie explains.

Ron's condition ticked the initial boxes, yet a definitive diagnosis required still more testing, including both a spinal tap and electromyography (EMG). EMG is often performed on patients with CIDP symptoms and symptoms of other motor or nerve disorders. By sending electrical signals directly to various points of the muscles and nerves, the test reveals how well the body conducts the signals to the brain. In CIDP, the myelin, or protective nerve coating, is damaged, causing problems with nerve signal conduction. This is known as demyelination.

Multiple sclerosis may be the most widely known autoimmune disease involving demyelination. In these patients, the immune system attacks nerve myelin in the brain and central nervous system. CIDP attacks peripheral nerves in the arms and legs.

In some cases, the final piece of the puzzle in diagnosing CIDP requires a nerve biopsy. Dr. Dimachkie and his colleagues have an on-site lab where they test nerve and muscle tissue samples. They also have the specific expertise and certification required to analyze the results.

"Being a center of excellence means that we are an elite site with clinical knowledge and diagnostic expertise," he says.

"Dr. Dimachkie put a name on my condition and told me we could treat it," Ron says. "It was an incredible relief."

Answers equal improvement

It's been more than a decade since Ron noticed the early signs of CIDP, but you'll still find him out and about, taking care of business on the farm.

"As long as I can keep farming, I'm fine," he says. "I don't think about my condition much anymore."

His ability to concentrate on farming instead of a mystery illness is thanks to ongoing CIDP treatments that help Ron maintain his strength and sensation. Every 3 weeks he receives an infusion of intravenous immunoglobulin (IVIG). A product made from blood plasma, IVIG provides crucial antibodies that prevent the immune system from continuing its assault on Ron's nerves.

Only about half of CIDP patients receive IVIG, says Dr. Dimachkie. The steroid prednisone is the other common therapy, reducing nerve inflammation and allowing for better function.

"These and plasma exchange are our first-line treatments, and most patients respond well to them," he notes.

Because the disease is chronic, Ron will need continued treatment to manage his symptoms, yet he says it's a small price to pay.

"Other than the inconvenience of the infusion every 3 weeks, it's really not bad," he says. "I notice my balance getting worse again right before the next infusion, so I don't climb grain bins anymore, but I can still do most things. I might not be as agile as I once was, but I'm making a living doing what I love, and that's what it's all about."

Patient testimonial: As with all treatments, individual patient results vary. It is important to discuss your treatment options with your healthcare provider.

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