Navigating CIDP: How One Man Survived a Near-Fatal Battle

In late October of 2022, James (Jim) Dines, a retired civil lawyer and previous service member of the New Mexico Legislature House of Representatives, was preparing for a round of golf. As he was warming up, he noticed his hands and arms weren’t moving as they usually did during his swing. He was unable to continue with his game, and 2 days later, Jim woke up to find he could no longer raise his hands or arms above his shoulders. He immediately went to the emergency room, where they performed an MRI. With inconclusive results, they were unable to find a definitive diagnosis, and Jim was admitted to the hospital for treatment.

By November 2022, the medical team initiated a treatment of intravenous immunoglobulin (IVIg), a therapy commonly used for neurological or autoimmune conditions. After completing the treatment, Jim was sent home with the hope that his condition would improve. Unfortunately, his symptoms quickly worsened, and he again found himself unable to use his hands or arms again.

Jim was readmitted to the hospital for a second round of IVIg treatment and was transferred to inpatient rehabilitation to regain strength. However, his recovery took a sharp downward turn. Just days into rehab, his legs gave out completely. With his condition declining, Jim was sent back to the hospital. This time, Jim was treated with plasmapheresis and returned to inpatient rehab. Within 2 more days, his condition worsened. He lost the ability to swallow and could no longer eat or move his body.

By the first week of December 2022, his providers readmitted Jim to the hospital in a state of near-total paralysis. His situation had become critical, and his condition —still without a clear diagnosis—was worsening quickly. His paralysis had advanced to the point where he struggled even to speak and could only do so with great difficulty. With his condition rapidly declining, Jim considered what this meant for him. “During my last hospital admission, I was told that I would need a feeding tube and eventually maybe a ventilator. I did not want to die that way, so I refused that treatment,” he said. Knowing this choice meant he would not survive long, Jim began to make funeral arrangements.

At the same time, Dr. John Norbury, a long-time AANEM member, was introduced to Jim’s case. He worked diligently with colleagues, Jim’s primary doctor, and others to find answers. Jim says, “As I was dying, I felt at peace and was comforted by my Lord. I was prepared for what may happen, but when I heard that others were doing research and consulting on my situation, it gave me renewed hope during the dark hours.”

Leveraging his AANEM committee involvement and collaboration with other members through AANEM Connect, Dr. Norbury worked alongside the care team to diagnose Jim with chronic inflammatory demyelinating polyneuropathy (CIDP), determining the need for long-term plasmapheresis several days a week over the course of several weeks. As they tested this new treatment, Jim’s family stuck with him every moment of every day for the several weeks it took for his condition to improve. Jim says although recovery was challenging, he was motivated by his will to hold his grandchildren and supported by the care and prayers he received from his family and friends.

By Christmas Day, Jim noticed an improvement in his condition. During a visit with his grandchildren, he miraculously raised two of his fingers and placed them on the tops of his grandchildren’s hands. His condition steadily improved as his plasmapheresis and rehabilitation treatments continued through January 2023. When he was able to walk with assistance, he was discharged to inpatient rehabilitation. After 10 days, Jim’s condition had improved, so he was discharged from inpatient rehab. He started outpatient rehab three times a week, and by June of 2023, Jim was back to playing golf. “I was 75 years old then, and since then, I have shot my age or better, several times,” Jim says.

He now manages his condition with mycophenolate twice a day and stays aware of his symptoms. “I try not to let it impact my daily life, but it stays in the back of your mind. I am mindful to watch out for any indicators of relapse, like numbness or impaired use of fingers, hands, and feet. The bottoms of both feet are numb sometimes, and the tops of both feet have tingling sometimes.”

Through everything, Jim says he is thankful every day that he is alive and can help others. He has returned to his favorite activities of delivering Meals on Wheels, serving food at his church, playing golf, traveling, and spending time with his wife, children, grandchildren, and friends. Jim encourages others who may be in a similar situation to “keep your faith, family, and friends; never quit, and be treated by doctors who are willing to consult with others to determine the best course of treatment.”

Rare NM conditions like CIDP are difficult to diagnose and treat due to the limited scientific data. That’s why the American Neuromuscular Foundation (ANF) supports efforts to learn more about these diseases and improve patient care by funding research studies and the creation of the Late-Onset Neuromuscular Disease Consortium (LONDC).

In 2019, Dr. Karissa Gable received the ANF Research Fellowship Award for her study of CIDP. She discusses the challenges with this disease. “Patients with CIDP continue to have unmet needs with respect to treatment and management. It is important to explore the underlying pathophysiology in this rare disease to more effectively treat it and improve patients’ quality of life,” says Dr. Gable. She says, “Research is fundamental to understanding, and with that understanding is a path forward to developments for patients that would not be possible otherwise.”

The LONDC also aims to improve the lives of patients with NMDs by helping to address the critical need for timely diagnosis in the LOND community. They work to improve awareness, understanding, and identification of LONDs, increase access to resources and support services, and enhance collaboration among providers, advocacy organizations, and the LOND community.

These initiatives mark a significant step toward creating meaningful change for individuals living with NMDs. To find out how you can contribute and make a lasting impact, visit the ANF's donation page.