Patient Comments: Multiple Myeloma - Symptoms

What were the symptoms of your multiple myeloma?

Comment from: Worried mom, 25-34 Female (Caregiver) Published: March 13

I have been having bad menstrual cramps since I was 10 and they first started. Apparently I do not have endometriosis. I also have my period nearly 24/7. I will be on for 2 weeks, off for 1, and then back on for 4, off for another 1, and then repeat. It's awful. I have been in the fetal position state of pain pretty much every time. I flow extremely heavily, and I have even been sent to the emergency room because of the pain and the blood flow. I have to take a cocktail of 6 ibuprofen and 4 Tylenol to feel even a little relief. Heat used to work, but it doesn't anymore. The only thing anyone's been able to do for me is to put me on the pill to regulate my period, which offers some relief, but by no means total. I just don't even know what to do.

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Comment from: Fran, 75 or over Female (Patient) Published: February 26

I"ve been treated for multiple myeloma for 4 years. I found out I had MM because of needing transfusions on numerous occasions. So far the medications seem to be working.

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Comment from: desmond, 45-54 Male (Patient) Published: January 17

My dad was told he had a frozen shoulder by his doctor in May 1994, when he was 54. The pain got worse and my mum went to the doctors with him in November 1994 and asked the doctor if he would do a test on his shoulder. The next week he had x-rays done and blood test and they give him the bad news that he had multiple myeloma. Within 4 weeks he went downhill and passed away the next month. I'm 48 and over the last 5 months I've had a very sore shoulder. My doctor has told me it's a frozen shoulder like they told my dad. I was wondering if I told the doctor about my dad and his frozen shoulder turning out to be myeloma, if she would send me for test or I'm I worrying too much.

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Comment from: Jazz of San Diego, 65-74 Female (Patient) Published: February 24

I had no new symptoms when I went in for my regular check up with my doctor. She ran a blood test and noticed an increase in my anemia. I had been on the edge, but now I was below the edge. She sent me to a hemotologist. I had no idea that she was checking for everything from anemia to leukemia or multiple myeloma. I was thinking "iron" pills. I had a bone biopsy that day and got the results about three weeks later at my next available appointment. It was a shock, and I was not ready for it. I was told that at this time it is rarely curable but treatable. No time frame of survival was given, and I was not able to ask any other questions as I had never heard of multiple myeloma. After three days of shock, I went on the web and gathered all the info I could and got my grown sons to help me look up more info. My whole family was in shock. I have been undergoing treatment for almost two years now, and I am tired, I have kidney problems, and I have one blood clot so far. So I am doing OK. I do go to a support group in San Diego, and it has been more then helpful.

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Comment from: First Daughter, 45-54 Male (Caregiver) Published: February 24

My dad was 51 when his multiple myeloma was diagnosed in stage III. He had been very tired for quite some time. (One ignored hallmark of the disease manifested about three years previously. He had always donated blood but was refused at about 48 because his iron was low. No one advised him to immediately check into that. As a young and strong man, his iron should not have been that low ever) However, he was a firefighter getting ready for retirement, so, we all believed he would be much better after a few months in his dream home in Wisconsin. He became more and more exhausted. Finally, when he was sleeping close to round the clock, my aunt forced the issue that he go to the hospital immediately. (She was a nurse.) He was diagnosed within one day as his kidneys were shutting down. He lived beyond any expectation of the medical community (some good years). He worked hard to remodel his dream home, got to meet a few new grandchildren and died at 55. Moral: Low iron counts in an otherwise healthy younger male are never "normal." Extreme exhaustion in anyone is not always a sign of depression or fatigue. Multiple myeloma can strike any age or demographic; Dad didn't fit any of the stereotypes.

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Comment from: gspieg, 55-64 Male (Patient) Published: October 28

My multiple myeloma started with a headache that wouldn't go away. It became slightly more severe with time. After a few weeks, enough was enough. I went to a walk-in clinic and asked for treatment. The physician ordered an immediate CT of my head and neck area. The CT was negative, and I was referred to a neurologist. I was misdiagnosed initially, and it was six months before I had another CT (or MRI). That test showed a tumor had formed at the base of my skull and the top of my spinal column. By then, I was experiencing ringing in my ears, double-vision, fatigue and pain in my neck and upper back. The tumor was biopsied and determined to be a plasmacytoma. I was referred to an oncologist who tested my blood and bone marrow and diagnosed my multiple myeloma. I went through radiation therapy to destroy the tumor. Either the tumor or the treatment destroyed part of my C-1 and C-2 cervical vertebrae. After the tumor was found, the initial CT was re-examined and a “shadow” was noted where the tumor formed. I was treated with thalidomide and dexamethasone for several months. My M-protein level began to rise and eventually got to 1.7.

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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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