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: 55-64 Female (Patient) Published: October 05

About four years ago, I was diagnosed with osteoporosis of the spine. My PCP started me on Actonel, which did not help. So, I was referred to an endocrinologist specializing in bone diseases. He started me on Forteo injections. After a year on this medication, my alkaline phosphatase levels went up to high levels. He then ordered a bone scan, which showed uptake in the skull area which is suggestive of Paget's disease. He immediately took me off the Forteo and ordered another skull X-ray.

Comment from: currently glowing, 55-64 Female (Patient) Published: October 05

I have persistent pelvic pain in my right side. It was thought that the source of the pain was a vaginal cyst which was removed a month ago, but the pain persists. During the past month I have had extensive blood work, an X-ray, a CT scan, and yesterday I had a nuclear bone scan. The technician commented the pictures are consistent with Paget's. It makes sense to me, although I have not yet been formally diagnosed. I have scoliosis, arthritis in my knees and back, and severe lower spine compression. I have had multiple fractures, including a broken clavicle and stress fractures in both ankles over the years. I am disappointed this was not diagnosed earlier, but I am hopeful it can be treated with a combination of meds, physical therapy, and alternative methods such as yoga and acupuncture because I am only 58 years old and lead an active life.

Comment from: Susie, 65-74 Female (Patient) Published: April 12

In the 1990's I had pain in the lower back when lying supine. Also I had soft tissue swelling at the 5th lumbar vertebrae. Alkaline phosphatase not elevated because of the limited area of bone involved. An MRI showed abnormal appearance to the posterior elements and perineural foraminal bone at the L-5 level. My father had non-symptomatic Paget's Disease of the bone.

Comment from: Carri, 75 or over Male (Patient) Published: March 23

I had terrible pain in my left butt, thought it was my sciatica. My doctor had me take an x-ray and that is how my Paget's disease was discovered. That was over 1 year ago and now I am followed by a bone specialist.

Comment from: Sonia, 65-74 Female (Patient) Published: January 06

I was suffering a lot of lower back pain and went to a chiropractor. When it didn't help me, he took x-rays and sent me to an endocrinologist. That was when I was 52 years old and diagnosed with Paget's. My alkaline phosphate levels were elevated and my back felt inflamed. The Doctor tried me on calcitonin which gave me severe headaches. He then tried pamidronate intravenously which really helped since I also have ulcerative colitis. I had that treatment twice but it has been a while since I last had it and am now finding that my pain is back with a lot of back pain and tingling down my legs.

Comment from: bone yard, 45-54 Male (Patient) Published: December 27

My hip was always aching ever since I was 25 it felt like low back pain with my upper front of my thigh going numb at times. I always stood favoring my good leg. Paget's was found at age 50 when I fell off a roof and broke my hip.

Comment from: Spencer, 55-64 Male (Patient) Published: December 06

I was wrestling with my brother and my bone snapped between my shoulder and elbow. Since then, I have broken that bone 5 times. It is now deformed with an outward curve. I was diagnosed with Paget's after the second break and I am currently seeking treatment for the disease, not just the broken bone.

Comment from: mason, 55-64 Female (Patient) Published: November 04

Constant headaches around the temple area, crown of head, and now the pain is located behind the right ear, extending to base of the hairline and around the neck.

Comment from: maaduke318, 45-54 Female (Patient) Published: November 03

I have been having quite a bit of neck pain, pelvic bone pain, and now other joint pain, rapid heartbeat, not able to sleep, headaches, weight gain and general pain throughout my bones. I am concerned because I had a brother with Paget's disease and he had similar symptoms. My eyesight is also getting worse. When I spoke to a doctor about this, he tried to brush it off as depression. I am NOT depressed. What is the likelihood I have Paget's and how do I get a doctor to listen to me without thinking it's all in my head? I also have a lot of nausea. I did have a hysterectomy about 2 years ago, but some of these symptoms started before that.

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