Patient Comments: Paget's Disease - Symptoms

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

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.

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.

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.

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.

Comment from: Martha, 65-74 Female (Patient) Published: October 20

I had severe spinal pain from my head to my tail bone. Severe headaches on one side of the head, and my ankles would turn suddenly. I am allergic to many meds, including ANY aspirin products, so I now wear braces on both ankles, and get epidurals every three weeks in the neck area to quiet the pain in my back, arms and head. Now, I'd sure like to stop the ringing in my ears that has been there for over 25 years. I am a 73 year old female. Thank You.

Comment from: Catherine, 55-64 Male (Caregiver) Published: February 26

My brother is 62 and has been diagnosed with Paget"s disease of the right ankle. He has had a brace and is taking calcium, they are now suggesting a plate be put in his ankle, because it gives out on him and is causing pain. His job is in maintenance at a local hospital, he is a little mentally challenged. I"m afraid the operation will force an early retirement. He fails to ask the right questions when seeing the specialist.

Comment from: Mario Batiz, 45-54 Male (Patient) Published: May 21

I the past two months, I have seen three doctors, who have given me three different diagnoses., including back pain, spinal stenosis and a possible tumor in my spine. Most recently I went to a rheumatologist, who said I have Paget's disease. I've had X-Rays, an MRI, a CT scan, and a bone imaging scan. The last CT scan involved drinking two bottles of magnesium, plus an IV ink to enhance the bones on the test. I guess what I'm really wondering is, what type of doctor should I be seeing for this condition?

Comment from: J. Shields, 65-74 Male (Caregiver) Published: January 24

My father has had a limp and atrophy in his right leg that has progressed over the past 15 years. None of the doctors that he has seen has offered a diagnosis. His last blood test showed elevated alkaline levels, so they did a CT scan and found that he tested positive for Paget's disease in his pelvis. Would this cause the atrophy? Should he have a CT scan of his entire body to see if it is in any other area of his body? I am just wondering.

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