Marine Corps veteran Tierney Mayer-Tucker in 2025 was diagnosed with a rare inflammatory disease called inclusion body myositis, which weakens and deteriorates muscles. The disease limits a person’s ability to walk, grasp objects, and perform basic tasks without assistance. Researchers are beginning to look for links between the disease and military service. (Tierney Mayer-Tucker)
Marine Corps veteran Tierney Mayer-Tucker, who deployed twice to the Persian Gulf, said that doctors for years misdiagnosed and dismissed a growing array of vague medical symptoms he was experiencing that included daily headaches, muscle pain, weakness and fatigue.
It was not until 2025, when Mayer-Tucker sought a second opinion from a private immunologist outside the Department of Veterans Affairs health system, that he was tested and received a positive diagnosis for a rare muscle-wasting disease called inclusion body myositis (IBM).
Little is known about inclusion body myositis, which is similar to ALS, or Lou Gehrig’s disease, and has no known cure, according to The Myositis Association, a nonprofit that funds research and advocates for patients.
The disease most often afflicts men 40 and older, according to the National Institutes of Health. It slowly robs individuals of their ability to perform daily functions, such as walking, grasping items and swallowing.
Early studies have indicated that IBM is more common in veterans than the general population, according to The Myositis Association.
But the VA does not formally track the disease, said Paula Eichenbrenner, executive director of The Myositis Association
VA determines benefits and health care coverage for veterans with IBM on a case-by-case basis, according to the VA.
“I had no known family history of autoimmune disease. I cannot honestly identify one specific cause with certainty,” said Mayer-Tucker, 49, of California, who left the Marines in 2001 after five years of service.
Marine Corps veteran Tierney Mayer-Tucker, who achieved the rank of sergeant, deployed twice to the Persian Gulf with the 13th Marine Expeditionary Unit. He served aboard the USS Boxer and the USS Tarawa. He received an honorable discharge in 2001, after five years of military service. (Tierney Mayer-Tucker)
Mayer-Tucker, who achieved the rank of sergeant, joined the military after high school and deployed twice to the Persian Gulf with the 13th Marine Expeditionary Unit. He served aboard the amphibious assault ships USS Boxer and USS Tarawa.
When USS Cole was bombed on Oct. 12, 2000, his unit was one of the first to respond and provide security off the coast of Yemen, said Mayer-Tucker, who worked as a clerk handling administrative duties.
Although Mayer-Tucker now has a 100% disability rating from the VA, it is not for IBM but for a nonspecific autoimmune disorder and other medical conditions, he said.
He said that he did not seek health care and benefits for service-connected IBM because of the years’ long delay finding out that he had the disease.
In May, the VA rejected his request for caregiver benefits, although the constant help that his wife provides enables Mayer-Tucker to continue to live at home, he said.
“The denial ignored the realities of IBM and the fall and safety risks associated with this disease,” Mayer-Tucker said.
“But the hard fight has been to get and keep the total medical care I need,” said Mayer-Tucker, who previously was told by VA doctors that his symptoms were psychosomatic.
“The VA has recognized some parts of my condition, but getting consistent treatment, coverage and coordination has still been a major struggle,” he said.
Because the weaknesses caused by IBM progress slowly, diagnosis can often take years, as symptoms are mistaken for normal aging or other reasons, according to Johns Hopkins Medicine.
Ursula Mecabe, an attorney who represents veterans before the VA, described the process for veterans with IBM to secure VA benefits and health services as a prolonged “multistep fight” largely due to a lack of knowledge and resources, including a medical diagnostic code for IBM.
Veterans often endure repeated exams, incorrect ratings and multiple appeals before the disability is evaluated correctly, she said.
Veterans and stakeholders are urging the VA to make IBM a presumptive condition to speed up their access to care and disability compensation, Eichenbrenner said.
“When the VA moves as slowly as the disease itself, these veterans often go for five or 10 years without the treatments they need to extend their lives and improve their quality of life,” Eichenbrenner said.
Mayer-Tucker first began exhibiting symptoms in 2014 but did not receive an IBM diagnosis for 11 years when he sought care from an immunologist in private practice, he said.
“I was seeing my doctors at the VA a lot before the diagnosis. I kept telling them that something was wrong, that they just needed to put the pieces together,” Mayer-Tucker said. “But no one took me seriously.”
“Evaluation and treatment were delayed, symptoms were minimized, and many concerns were attributed to psychological causes,” he said.
Mayer-Tucker became so despondent that he began to feel suicidal, he said.
In 2023, Mayer-Tucker sought treatment outside the VA with a private immunologist and was diagnosed two years later with IBM through antibody testing and an electromyography (EMG) of his muscles.
Jawni Mayer-Tucker, his wife, said she felt relief when they received a conclusive answer.
“The things I noticed before the diagnosis were explained — his lack of strength, lack of energy and cognitive decline. I understand now he was having flareups,” she said.
Tierney Mayer-Tucker said that earlier detection would have enabled him to receive treatment to ease symptoms and slow the progression of the disease.
Mayer-Tucker also has been diagnosed with small fiber neuropathy, autonomic dysfunction, and specific antibody deficiency, which requires regular IV treatments of immunoglobulins, made from the blood plasma of healthy donors.
“There have been delays, interruptions, and gaps in care, especially around specialty care, IVIG, physical therapy, mobility support, and community care coordination as well as some preventable hospitalizations,” he said.
There are no specific drugs to treat IBM, but patients and their caregivers learn how to manage the disease with medication, exercise and therapy.
The lifespan of a patient can be shortened by complications due to weakened muscles, including difficulty swallowing, breathing problems, and falls and fractures.
VA Press Secretary Quinn Slaven said Thursday that the agency “continues to investigate IBM and asked the National Academies this year to conduct a new, comprehensive study on this condition. In the meantime, VA continues to decide disability benefits for IBM on a case-by-case basis.”
The research — by the National Academies of Sciences, Engineering and Medicine — is part of a larger study on veteran health and military exposures, according to The Myositis Association.
The Myositis Association offers an online peer support group for veterans with the disease.
Mayer-Tucker is a member and connects on social media with other veterans who have IBM and their families.
The forum allows the veterans to share experiences, discuss how the disease progresses, and engage in advocacy efforts.
The support group is particularly focused on making IBM a presumptive condition to ease access to care and benefits.
Veterans with an IBM diagnosis say that it has been a challenge for them to prove a connection to their military service for a disease that doctors and scientists do not fully understand
“What is most important is that the word is finally starting to get out about myositis. People are learning about the course of a disease that, in my case, was ignored and dismissed for too long,” Mayer-Tucker said.
