Helping Advance A Cure After Misdiagnosis: Michelle’s Multiple Myeloma Story

In 2014, at age 42, I was diagnosed with multiple myeloma. Looking back now, I can see the warning signs that started a couple of years earlier, back pain that wouldn’t go away, fatigue that no amount of rest could fix, and frequent infections. I knew something wasn’t right, but finding answers was harder than I ever imagined.

I went from doctor to doctor searching for help. One told me to exercise more and I wouldn’t feel so tired, but I was already going to the gym three to four times a week while juggling life as a busy mom. Another gave me muscle relaxers and pain medications. None of it helped. As the pain became unbearable, I kept pushing for answers.

A diagnosis delayed

An orthopedic specialist wanted to order an MRI, but my insurance denied it until I completed 12 sessions of physical therapy. I barely made it through two! My back spasms were so severe that my ribs would shift out of place. For temporary relief, I even turned to a chiropractor, but the pain always returned. In the middle of all this, I married my husband, trying to focus on building our life together despite the worsening pain.

Things got worse. I started throwing up daily, and I relied on a wheelchair at times because walking became so painful. Even then, doctors brushed off my symptoms. At one point, an X-ray revealed broken ribs, but I was simply handed more medication. I felt like I was falling apart, and no one was listening.

Out of desperation, I started searching online. Myeloma came up as a possible explanation, but I dismissed it; after all, it seemed like WebMD always pointed to cancer. I made another appointment with my orthopedic specialist and told him about the broken ribs, and asked why this is happening. He pushed harder with my insurance company, and I was finally approved for an MRI.

That Friday morning, I had the MRI. By Friday night, I was crumpled on the floor in pain so severe I couldn’t stand. My husband and daughter picked me up and rushed me to the ER, where another MRI revealed that my spine was filled with lesions. The doctors stopped counting the lesions because there were so many. Even my skull showed lesions, one nearly an inch across. Blood tests showed dangerously high calcium levels, and I was admitted to intensive care.

That weekend, I was told I had multiple myeloma.

Starting treatment was overwhelming, but I immediately connected with my oncologist, who made me feel safe and heard. I began Velcade, Revlimid, and Dexamethasone. My identical twin sister dove into research on my behalf. She found a patient who had received a syngeneic transplant, which is a transplant using stem cells from an identical twin. We brought the idea to my oncologist, and in January of 2015, I underwent my own transplant.

Finding community after a multiple myeloma diagnosis

Coming home from the hospital, I felt fragile. Around that time, my sister introduced me to Jenny and the Myeloma Crowd community. I was invited to a lunch with Jenny and other members, and for the first time, I sat at a table surrounded by people who truly understood what I was going through. It was life-changing. I realized I wasn’t alone.

But even after the transplant, I struggled. My pain worsened, and I needed a cane to walk. Imaging showed new lesions, and radiation followed. My doctors told me to be patient, that my sister’s cells would take over “any day now.” But my instincts told me otherwise. That’s when I reached out to Jenny again. She explained what it meant to see a true myeloma specialist. I quickly scheduled an appointment, switched clinics, and began a new treatment regimen with Carfilzomib, Revlimid, and Dexamethasone. That decision changed everything.

In 2018, I achieved MRD negativity, and I’ve remained there ever since. I am healthy and active, and I no longer walk with assistance.

Accelerating a cure with HealthTree

Another turning point in my journey was attending the Myeloma Crowds 50 City Tour in Salt Lake City, where I immediately connected my medical records to the Cure Hub platform. At first, I was nervous about sharing something so personal. Then I learned that all records in HealthTree are completely anonymous — no names, no personal details — just data that becomes incredibly powerful when combined with others.

That’s when it clicked for me:

• My records weren’t just about me, they could help uncover insights for every myeloma patient.
  
  
• The more shared records, the more researchers can see patterns, treatment responses, and better options.
  
  
• Sharing records means contributing directly to faster progress and, someday, a cure.
  
  

Since then, I’ve chosen to be part of the solution. I even joined HealthTree as an employee in 2021 because I believe so strongly in its mission. I know what it feels like to be desperate for answers. I know how isolating a diagnosis can be. I also know how important it is to have resources and research that come directly from patients like us.

That’s why I am sharing my records in HealthTree and encouraging you to do the same. Your story matters. Your medical journey has value, not just for you but for the entire myeloma community.

If you’ve ever felt powerless in your diagnosis, sharing your records is one way to take that power back. It’s a simple step that fuels research, supports other patients, and brings us closer to a cure.

I’ve been MRD negative since 2018, and I know I wouldn’t be here without the support, knowledge, and resources I found through this community. My hope is that by sharing my story and my records, others will feel empowered to do the same. Together, we are stronger. Together, we are moving toward a cure.

If you want to join Michelle in connecting your records, join HealthTree’s Cure Hub today.

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