TL;DR
I am a United States Marine Corps veteran with service-connected Inclusion Body Myositis (IBM), Small Fiber Neuropathy/Autonomic Dysfunction, and Specific Antibody Deficiency with the last 3 requiring IVIG treatment over two days every 2 weeks.
For more than a decade, worsening medical findings and progressive physical decline were repeatedly delayed, misattributed, or pushed into a somatization narrative while the underlying disease continued to advance.
After moving from Colorado to California in August 2024 to access better specialty care, UCLA picked up my IVIG treatment path when San Diego VA failed to maintain continuity. Although a VA physician approved continuation of that UCLA care in my best medical interest, San Diego VA Community Care later blocked and disrupted it, causing treatment gaps, severe flares, and four hospital admissions between September 2024 and March 2025.
West Los Angeles VA took over my care in March 2025, but IVIG only remained in place because Medicare/Medicaid temporarily carried what the VA had failed to maintain, and VA authorization was still not resumed for approximately another year.
I now live with a lifelong progressive muscle disease that will continue to cause increasing weakness, swallowing and breathing decline, loss of mobility, and growing dependence over the remainder of my life.
A federal attorney is willing to pursue the case, but it cannot move forward without independent medical experts to formally prove years of delayed diagnosis, interrupted treatment, and worsening harm.
I am raising funds solely to cover the expert witness and case-development costs needed to finally hold the VA accountable.
Full GoFundMe Statement
My name is Tierney Mayer-Tucker. I am a United States Marine Corps veteran asking for help to fund the independent medical experts needed to pursue accountability after years of documented VA medical failures.
My conditions are service connected, yet for more than a decade I repeatedly sought treatment through the VA as my health steadily worsened.
During those years, worsening medical findings, abnormal test results, swallowing difficulty, diaphragm weakness, and progressive physical decline were repeatedly minimized, misattributed, or forced into a somatization/psychological narrative while objective disease continued to advance without timely recognition or appropriate intervention.
I was eventually diagnosed with:
• Inclusion Body Myositis (IBM)
• Biopsy-confirmed Small Fiber Neuropathy/autonomic dysfunction
• Specific Antibody Deficiency requiring IVIG treatment
By the time these conditions were finally identified, years of progression had already occurred.
IBM is a lifelong progressive muscle disease with no disease-reversing treatment. Its course is one of continuing muscle loss and functional decline over the remainder of life, with increasing weakness, worsening swallowing and breathing involvement, loss of mobility, growing caregiver dependence, and advancement toward wheelchair use, feeding support, respiratory support, and potentially bedbound levels of care as the disease progresses.
Because of that, the central medical goal is preserving as much strength, function, breathing capacity, swallowing ability, and independence as possible through continuous management of both IBM and the overlapping neurologic and immune conditions that further destabilize it.
IVIG was not prescribed for IBM. It was prescribed for my Small Fiber Neuropathy/autonomic dysfunction and Specific Antibody Deficiency — conditions that were causing severe flares, instability, pain, and major functional worsening on top of an already progressive muscle disease.
In August 2024, my family and I made a planned move from Colorado to California. Part of that move was also the hope that climate and access to California specialists might help as my diaphragm weakness and breathing issues worsened.
I was already receiving IVIG before the move. After arriving in California, UCLA specialists picked up that treatment path when San Diego VA failed to properly maintain continuity of care.
A VA physician later approved continuation of my UCLA care in my best medical interest and for continuity of care. That approval should have protected the treatment plan that had finally been put in place.
Instead, San Diego VA Community Care blocked and disrupted continuation of that approved care. Existing authorizations were cancelled or allowed to lapse, continuity was broken, and I was even told by San Diego VA to fly back to Colorado to try to preserve IVIG access that should have been maintained in California.
These events did not occur in a vacuum. They followed years of delayed recognition and then the breakdown of an already-approved specialty treatment pathway during a period of severe medical instability.
The resulting treatment gaps led to interruption and reduction in IVIG treatment, severe worsening flares, escalating neuromuscular symptoms, significant pain, and four hospital admissions for rescue IVIG and flare management between September 2024 and March 2025 involving UCLA, UC San Diego, and West Los Angeles VA.
After the last hospitalization, West Los Angeles VA took over my care in March 2025 because San Diego VA was no longer workable for the complexity of my condition.
IVIG was finally restarted in April 2025 only because Medicare/Medicaid was able to temporarily carry what the VA had failed to maintain.
Although West Los Angeles VA had taken over my care, VA authorization of IVIG was still not resumed for approximately another year.
That means the only reason this critical treatment remained in place during that period was Medicare/Medicaid coverage, not timely restoration through the VA system that had originally disrupted it.
Even with IVIG restarted, the damage from the treatment gaps and years of delayed recognition did not simply disappear.
I continue to live with progressive muscle weakness, swallowing and diaphragm involvement, autonomic instability, chronic pain, severe flares, and an uncertain long-term prognosis.
Because IBM has no disease-reversing treatment, care is now centered on slowing avoidable decline and preserving function through long-term physical therapy, occupational therapy, swallowing management, pulmonary monitoring, adaptive equipment, and increasing supportive care as the disease progresses.
The long-term burden is not limited to weakness alone. It includes falls, respiratory decline, home accessibility needs, caregiver dependence, and other escalating medical support over time.
After years of trying to navigate this alone, a federal attorney has reviewed the documentation and is willing to pursue the case.
The records are there. The timeline is there. The documented VA delays, misdiagnosis, treatment interruption, and resulting harm are there.
What is still missing is the independent specialist review required to formally prove those failures in a federal medical negligence case.
Because this case spans thousands of pages of records, multiple years of treatment, delayed diagnoses, misdiagnosis, interrupted specialty continuity, treatment gaps, progressive permanent harm, and repeated hospitalization, it cannot move forward without multiple independent medical expert witnesses.
These experts are needed to establish where accepted standards of care were not followed, how years of delayed recognition contributed to progression, how interruption of established specialty treatment worsened the medical decline, and the full long-term medical and functional impact these failures continue to carry.
Without those experts, years of documented delayed diagnosis, blocked specialty care, treatment gaps, worsening progression, and repeated hospitalization may never be fully examined in court, and the opportunity for accountability may be lost.
That is why I am asking for help now.
There is also growing outside awareness surrounding this case and the broader issue of veterans with rare progressive diseases facing delayed diagnosis and barriers to specialty care, with ongoing media outreach beginning to bring additional attention to these failures. But attention alone does not move a federal medical negligence case forward. Independent medical experts do.
The initial retainers for the required experts alone are expected to exceed $25,000, with additional review and reports needed as the federal case advances. I am setting this fundraiser at $100,000 to cover independent medical expert retainers, formal reports, chronology analysis, prognosis and life-care evaluation, and continued case-development costs.
All funds raised will go solely toward the expert and litigation-support costs needed to move the case forward.
This funding is not for personal expenses. It is to ensure that years of documented medical failures and worsening harm can be fully reviewed by independent specialists and properly presented.
Any donation or share helps move this case one step closer to accountability.
Thank you for reading and for any support.
— Tierney Mayer-Tucker
I am including as pictures my VA diagnosis page as well as my service connections. I was already essentially 100%, and only pursed service connection for it in case they killed me, so my wife would be taken care of.
As they happen I will add links to media as it happens, as well as updates on the entire process.
John Hopkins IBM Overview
A documentary about Vets with IBM, (I am not as advanced as those in this yet).
If wanted I can post videos about my comorbid conditions, but those can be managed as long as IVIG access/immune meds are maintained and uninterrupted.
Organizer
