Patient Comments: Multiple Myeloma - Symptoms

What were the symptoms of your multiple myeloma?

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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Comment from: SWEET SUE, 45-54 Female (Caregiver) Published: December 15

My RFT (renal function test) anion gap is low. My right sole skin is cracked and peeled every 2 to 3 weeks once. My both knees x-ray shows osteoarthritis changes. My Pap smear showed atypical changes. I have constant fatigue.

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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: 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: JD's caretaker, 45-54 Male (Caregiver) Published: October 24

My husband is a runner and runs every day! I watched as he kept scratching his upper inside thigh. I took a look and there was a 1" x 2" welt. I took him to a vascular surgeon I work with. She did an ultrasound scan. The vein was one big clot from groin to ankle! He had blood tests done every year for years. The results were sent to the primary care physician but it was never caught. It took four months to diagnose with bone marrow aspiration and biopsy. The diagnosis was that he had high risk, Stage III multiple myeloma.

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Comment from: heartbroken in London, 75 or over Male (Caregiver) Published: November 19

My father was diagnosed with multiple myeloma last October 2007. He had a very loose stool for a couple of days; later on he went to an urgent care facility. They told him it was a virus and to go home and take Imodium A-D. That was Saturday. Monday, he went to his primary care doctor. He checked him and said, “I think you have a virus too. But I want to do some blood tests before you go.” After receiving the blood tests, the doctor then sent him for X-rays. In just a couple of hours he was diagnosed with multiple myeloma, and now the fun begins!

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Patient Comments

Viewers share their comments

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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