Veteran with rare muscle-wasting disease seeks VA recognition

Tierney Mayer-Tucker, a Marine Corps veteran, spent over a decade seeking answers for a deteriorating set of health symptoms. After years of being dismissed by the Department of Veterans Affairs, he was diagnosed in 2025 with inclusion body myositis (IBM), a rare and debilitating muscle-wasting disease.

Understanding Inclusion Body Myositis

Inclusion body myositis is a rare inflammatory disease that causes muscles to weaken and deteriorate. According to the National Institutes of Health, the condition most often affects men aged 40 and older.

The disease is similar to ALS, or Lou Gehrig’s disease, and currently has no known cure. It slowly strips individuals of their ability to perform essential daily functions, including walking, swallowing, and grasping objects.

Did You Know? While serving as a clerk with the 13th Marine Expeditionary Unit, Tierney Mayer-Tucker’s unit was among the first to respond and provide security off the coast of Yemen following the bombing of the USS Cole on October 12, 2000.

A Decade of Misdiagnosis

Mayer-Tucker first began exhibiting symptoms in 2014, including daily headaches, fatigue, and muscle pain. For 11 years, he sought help from VA doctors, but his concerns were often minimized or attributed to psychological causes.

The struggle for a diagnosis took a severe emotional toll, leading Mayer-Tucker to feel suicidal. It was only after seeking a second opinion from a private immunologist in 2023 that he received a conclusive diagnosis in 2025 through antibody testing and electromyography (EMG).

Mayer-Tucker, who served aboard the USS Boxer and USS Tarawa, now lives with IBM alongside small fiber neuropathy, autonomic dysfunction, and a specific antibody deficiency that requires regular IV immunoglobulin treatments.

The Fight for Veteran Benefits

Despite a 100% disability rating from the VA, Mayer-Tucker notes that the rating is for a nonspecific autoimmune disorder rather than IBM. In May, the VA rejected his request for caregiver benefits, a decision he says ignores the safety and fall risks associated with the disease.

Attorney Ursula Mecabe describes the process of securing benefits for IBM as a “multistep fight.” This is largely due to a lack of resources and the absence of a specific medical diagnostic code for the condition within the VA system.

Expert Insight: Samantha Carter notes that the lack of a formal diagnostic code for IBM creates a systemic barrier for veterans. Without standardized tracking, patients may face prolonged periods of incorrect ratings and repeated exams, which could delay essential quality-of-life interventions.

Looking Toward the Future

The Myositis Association reports that early studies indicate IBM is more common in veterans than in the general population. However, the VA does not currently track the disease formally, deciding benefits on a case-by-case basis.

VA Press Secretary Quinn Slaven stated that the agency has asked the National Academies of Sciences, Engineering and Medicine to conduct a comprehensive study on the condition as part of a larger look at military exposures.

Advocates and veterans are urging the VA to designate IBM as a presumptive condition. Such a move could potentially speed up access to disability compensation and critical care for those suffering from the disease.

Frequently Asked Questions

What is inclusion body myositis (IBM)?
IBM is a rare inflammatory muscle-wasting disease that weakens muscles, limiting a person’s ability to walk, swallow, and grasp objects. It is similar to ALS and has no known cure.

How does the VA currently handle IBM benefits?
The VA does not formally track IBM and determines health care coverage and disability benefits for affected veterans on a case-by-case basis.

Why are veterans pushing for IBM to be a presumptive condition?
Making IBM a presumptive condition could ease the process of proving a connection to military service, potentially speeding up access to necessary treatments and compensation.

How can the healthcare system better support veterans facing rare, slow-progressing diseases?