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Confused woman with spine x-ray with doctors on either side of her

From Passive By-Stander to Empowered Partner (Part 1)

I’ve told this story before, but I believe it is worth repeating.  Prior to my multiple myeloma diagnosis in 2008 I was a passive by-stander on my health care team.  I grew up in the age of paternalistic medicine. I possessed the “doctor knows best” mentality and blindly followed my doctor’s orders without asking any questions.  It never crossed my mind to educate myself about my illnesses so I could be prepared to engage in informed discussions with my physicians during scheduled visits. Fortunately, I was a fairly healthy individual, so my lack of involvement didn’t have major consequences.

Excruciating pain sets in

Things changed during the summer of 2006 when I began feeling extreme fatigue and nagging back pain. By the fall of that same year, there were days that the pain in my lower back was so excruciating that I could not physically get out of bed.  I decided to make an appointment with an orthopedic doctor to determine what was causing this agony. After a brief exam, my orthopedic doctor diagnosed me with degenerative disc disease. I was sent home with prescriptions for pain medication and physical therapy.

Unfortunately, my back pain did not subside.  It grew worse. During the next two years, I returned to the same physician at least a dozen more times.  At each return visit, in addition to physical manipulations, I was prescribed varying combinations of pain medications, anti-inflammatories and muscle relaxers along with more sessions of physical therapy.

Degenerative disc disease or something else?

There was something that troubled me about my diagnosis. My doctor never ordered any imaging of my back. From the beginning, my instincts told me that I should be asking how my doctor arrived at my diagnosis of degenerative disc disease, could anything else be causing my back pain beside degenerative disc disease and could an x-ray or MRI help unravel what was causing my distress. But I didn’t trust my instincts. I thought I would offend my doctor by asking those questions, so I remained silent. Doctors knew best.

Being a fifth-grade math and science teacher, I was on my feet most of the day. I managed to get through the week by consuming enormous doses of over the counter pain relievers in addition to the medications I was prescribed.  One day my colleagues found me sleeping at my desk after I missed the scheduled faculty meeting. They insisted I return to the doctor.  I reluctantly did.

On this return visit, two years after my initial consult, I was surprised but happy that my doctor decided to take an x-ray of my back.  The x-ray revealed I had several compression fractures in lumbar spine.  I was scheduled for outpatient surgery to repair these fractures. I was relieved because I thought we finally had an answer to what was causing all my pain.

Discovering the real diagnosis

Prior to my surgery, I needed bloodwork. My labs came back extremely abnormal. My surgery was cancelled, and I was referred to a hematologist.

My hematologist knew immediately that I had multiple myeloma after reviewing my blood work, taking a patient history, and listening to my symptoms.  He order a few additional blood tests and a performed a bone marrow biopsy. The test results confirmed that I indeed had multiple myeloma and I didn’t have degenerative disc disease after all. We finally had an answer to what was causing all my fatigue and pain. I entered into Cancerland.

Read Part 2 of Cindy’s story here.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • VinnieCent moderator
    2 weeks ago

    It is so scary to imagine that you walked around for that long without a diagnosis. I, myself, went a couple weeks between experiencing symptoms and finally being diagnosed. And I was in critical shape. Point being, glad you are here with us @cindyc!

  • earthmissy@gmail.com
    8 months ago

    Your story is so common to multiple myeloma patients including mine. Can’t we get orthopedists to get more awareness of multiple myeloma? Since blood work seems to be an easy thing to do, couldn’t that be a routine thing for people who are have orthopedic problems along with imaging. It really angers me that so much pain must be suffered, before diagnosis.

  • CindyC moderator author
    8 months ago

    I agree totally. We need to spread awareness to our PCP and orthopedic doctors. The International Myeloma Foundation has an awareness letter that can be downloaded and mailed to local physicians as part of the March is Myeloma ACTION Month campaign. http://mam.myeloma.org/patient-action-letter/

  • Ann Harper moderator
    8 months ago

    My daughter had the same experience. She was told her fatigue was due to her job change. My daughter wanted to believe it, after all she was so young, but she knew deep inside her extreme tiredness was not due to just the job. Finally she found a doctor that did more tests and she was able to get treated. We always have to be our own best advocates.

  • CindyC moderator author
    8 months ago

    I have learned to become my own advocate. It took practice since I was brought up in the age of Doctor Knows Best. I now share my story to let others know how important it is to be an educated, engaged partner on your healthcare team.

  • Ronni Gordon moderator
    8 months ago

    Wondering what you said to the doctor who had misdiagnosed you all those years!

  • MyelomaTeacher
    8 months ago

    When I called to cancel my surgery I told the orthopedic doctor I had Myeloma. I then preceded to tell him that fatigue and back pain are 2 of the main symptoms of this cancer. I suggested that he keep this in the back of his mind when treating individuals whose pain doesn’t subside with PT and meds. Xrays are cheap and could be helpful. I never returned to that practice after this conversation.

  • Yolanda Brunson-Sarrabo moderator
    8 months ago

    It’s really crazy when we find the truth. I think of the statement can you handle the truth… I guess it depends on what is behind the answer. I’m happy they were able to find a definitive answer so that you could deal with this accordingly.

  • CindyC moderator author
    8 months ago

    Me too. Once you know the correct diagnosis you can move forward. Sometimes the truth is hard to handle, but always worth hearing.

  • Ann Harper moderator
    8 months ago

    I totally agree. You have to know what you’re dealing with in order to know how to move forward.

  • Yolanda Brunson-Sarrabo moderator
    8 months ago

    Indeed, Indeed @cindyc

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