Patient Comments: Multiple Myeloma - Symptoms

What were the symptoms of your multiple myeloma?

Comment from: Susan, 45-54 Female (Patient) Published: March 08

I have had diabetes type II since I was 40, and every time there was a medical problem it was blamed on my diabetes. I worked in medical offices for many years. It started with having no energy. I would have to stop many times just to rest before clocking in. My heart had irregular heartbeats. I had neuropathy in my feet and hands. They said it is my diabetes. I had gynecologic cancer ten years earlier and had radiation and I thought I was home free. Then one day there was a lump on the middle of my forehead, it was the size of a small egg. I asked nurses, doctors, and nurse practitioners. I kept getting infections. 'It's the diabetes,' or 'did you bump your head?' That's what they kept asking. I kept telling them no. I knew something was wrong. It was a first year resident that did the right tests, and listened to my symptoms instead of saying it is diabetes. I have stage III multiple myeloma and I am thankful this doctor came my way. The other doctors gave him a hard time, but he didn't give up.

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Comment from: lisa s., 45-54 Female (Patient) Published: July 17

I am 48 years young, was an active person went to the gym 3 to 5 times a week. It started out I was tired all the time and sometimes weak, then a pain behind my left shoulder pain that went down my bicep. Then one day at work my back; I went to turn and my back cracked, not in a good way, and I lost my breath. To make a long story short a few days later I went to the hospital because by this time I could hardly walk. After 4 days of tests in the hospital I found out I had a fractured spine and also they found multiple myeloma. But if it wasn't for this one doctor I still probably wouldn't have known.

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Comment from: izitso, 55-64 Male (Patient) Published: April 28

It seems I am not alone. I was diagnosed a few years ago with the MGUS multiple myeloma status and since then it is 3 monthly blood tests and monitoring. The main symptoms that foretold something was wrong were chronic fatigue and burning headaches. I was taking time off work and feeling generally depressed, low platelets mainly. Basically I have stage 1, so I am lucky. I now have negotiated with my government job to have the mid-week day off by working 1 hour extra each day. As things progress I have now noticed painful knees and strong smelling urine. But it is better than being hit by a bus, so as the song goes, 'always look on the bright side of life!'

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Comment from: Old Texan, 75 or over Male (Patient) Published: April 01

I am 76. My multiple myeloma (MM) symptoms, although not realized, started with immune deficiency. During 2010-11 winter, I developed an upper respiratory infection three times. In 2011 I developed a case of shingles. During 2011-12, I had more upper respiratory problem and an ear infection. I asked my primary care physician (PCP) to check my immune system. In the meantime, I noticed back pain (I had L4/L5 fusion surgery), increased fatigue and loss of grip resulting in breaking several dishes. I visited a walk-in clinic where they drew blood and found that I had a high level of calcium in my blood. I had increased pain in my back and thought it might be shingles again. I experienced mental confusion but an MRI showed nothing. A CAT scan showed a T11 fractured vertebra. Increased pain prompted a trip to the emergency room. I went into a sub-conscious state and experienced hallucinations. The oncologist diagnosed the MM and I was admitted with poor kidney function (20 percent) due to calcium intrusion. First ten days were a critical stage.

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Comment from: Rough Ride, 55-64 Male (Patient) Published: August 15

I had severe lower back strains three separate times. I thought it was due to my workouts and getting older. A few months later I was feeling very badly and soon after was hit with the most extreme pain I've ever felt. At first I thought it was a kidney stone but the next day pain moved from my side to center back area. The pain was so intense my family had to slowly lift me off of bed. After a couple weeks, I finally went to doctor. (Don't be stubborn like me!) X-rays were negative. Two more weeks of misery and doctor scheduled an MRI and that's when they found multiple myeloma (MM) stage III cancer. Fractured vertebra, fractured a total of four, and lost two inches in height so far. I had radiation for nine weeks to remove multiple tumors in my back. An extremely long and painful journey I believe very few would be able to withstand. I have now gone through stem cell transplant and now on maintenance Velcade chemotherapy. I'm lucky to be alive but I will be disabled for the rest of my life from a much damaged spine. Family and good doctors (Veterans Affairs doctors) got me through it. Note, a blood test from treatments for pre-diabetes about six months prior, did show an elevated protein level. (A sign of this type of cancer.) MM is not an easy cancer to spot and if caught late like in my case, a very nasty cancer it is!

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Multiple Myeloma - Prognosis Question: What is the prognosis for your multiple myeloma?
Multiple Myeloma - Diagnosis Question: Describe the tests and exams that led to a diagnosis of multiple myeloma.
Multiple Myeloma - Treatment Question: What kinds of treatment have you, a friend, or loved one received for multiple myeloma?
Multiple Myeloma - Follow-up care Question: What type of follow-up care do you or a relative receive for multiple myeloma?

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