Patient Comments: Paget's Disease - Symptoms

The symptoms of Paget's disease vary from patient to patient. What were the symptoms at the onset of your disease?

Comment from: Timarie, 55-64 Female (Patient) Published: January 17

I have pain in my right hip. I had arthritis in my right knee and when the physician's assistant (PA) decided it was time to take x-rays I suggested we x-ray my hip as well because I would suffer at times from awful, throbbing pain all the way from my hip to my foot. The PA diagnosed me with Paget's disease and scheduled a bone scan. The next day I was scheduled to see another doctor in the same practice to inject my right knee and he convinced me I didn't have Paget's disease, but it turns out I have it in my right pelvis, my right hip, clavicle, femur, skull, and lower back. It is very painful at times and I am not able to take aspirin as my kidneys cannot tolerate it.

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Comment from: Shady, 45-54 Female (Patient) Published: September 09

I've just seen my general physician after having x-rays for the third time for extreme pain in my right groin. This started in April of 2015. The pain was so bad I was unable to move my right leg. The x-rays came back and my doctor is sure I have Paget's disease as two more fractures have been found. I have one in my upper right arm, which is painful not to mention frustrating as I am right handed. My problem is the fact that I am highly sensitive to most medicines as well as vitamin supplements. I react very badly to vitamin D and all other vitamins. I know I won't be able to tolerate treatment and won't even try it. The reactions I have are at time torturous and I will not put myself through anymore suffering. As it is I cannot shower myself and need daily care. I have arthritis on top of everything else.

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Comment from: Sweetie, 55-64 Female (Patient) Published: August 24

I fell a few years ago and got a plateau fraction in my left leg. After the doctor put three screws in my leg, the break healed and I thought all was well. I started getting headaches and the doctor said maybe I had a pinched nerve. After not being able to control the headaches, the doctor did a radioactive bone scan. During the scan, they found the Paget's disease. Since then, my left leg has had a lot of deep, lower leg pain. At this time, my family doctor is sending me to see the bone specialist that did the surgery when I had the plateau fracture. They are thinking about taking out the screws and seeing if that helps my bone pain.

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Comment from: robyn l, 45-54 Male (Caregiver) Published: July 07

My husband has suffered with osteoporosis and headaches for years and has also had many fractures over the years. He is now developing lumps on his skull from Paget's, and debilitating headaches that never stop even with heavy opioid pain medications.

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Comment from: Kishore Pothuri, 65-74 Female (Caregiver) Published: November 16

The calcium levels in my mother were always going down, even after giving daily dosage of calcium tablets. She got fits due to low calcium. Then doctors started calcium spray as her body was not able to absorb calcium from tablets. After that the doctor doubted that there's something wrong going on in her bones, for which they have done a bone scan and identified that it's due to Paget's disease.

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Comment from: Jack, 65-74 Male (Patient) Published: November 29

I served in the Air Force from 1962 to 1966 as an Air Police K9 security handler and of course training these dogs to be vicious, I was bit several times by just about most of the dogs being trained, in spite of wearing an attach suit and sleeve. Five years ago in 2011 I was diagnosed by the Veterans Administration (VA) physician as having Paget's disease and of course claimed disability due to my training these dogs. From what I have read is that the canine distemper virus (CDV) has been proven to be responsible for those cases diagnosed with Paget's. I am still waiting for my appeals; after 4 years of submitting to The VA.

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Paget's Disease - Treatment Question: Please describe the treatment you received for Paget's disease.

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