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February 10, 2012

Patient Discussions: 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: 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.

Related Reading: pinched nerve | Paget's disease | fracture

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: Robert, 55-64 Male (Patient) Published: January 31

Well, the first symptoms were an occasional sharp pain in the groin area or the right hip. I had a check at the hospital, had to swallow barium. That showed a black area from my lower right calf up to my waist. The left side had about half the black and I don't really have any pain there. I recounted a dog bite I'd suffered as a 4 year old and the doctor said that might be the cause. He said whilst it's not curable we can slow Paget's down. I'm now 64 and the pain on my right side will only allow me to sleep for maybe an hour and then the pain wakes me up forcing me to turn on my left side. So I sleep badly and also without warning I can get a searing pain in the groin area which makes me see stars! Also the doctor told me that one leg is shorter than the other. So, it's something I have to put up with.

Related Reading: dog bite | sleep

Comment from: Phyllis P., 65-74 Female (Patient) Published: November 01

Diagnosis confirmed by open biopsy per cervical spine #6. Mass on cervical 5, 6, and 7. Symptoms prior were left neck pain, left arm pain with shooting pains down the arm at times, numbness in little and ring finger. Four years prior, Paget diagnosis in right femur. Recent test results and diagnosis all led to cancer of the spine per bone scan, MRI, CT scan and PET scan as the uptakes were very high. I have history of over 35 years of cancer. Thankfully, neurology surgeon did the biopsy!

Related Reading: neck pain | cancer | MRI

Comment from: nosypat, 75 or over Male (Caregiver) Published: August 17

10 years ago my husband, then aged 72, started getting severe pains in his left knee. I was told it is arthritis, take pain killers and rub something on it. The pain persisted and got worse. I asked for x-rays which suggested Paget's, a blood test confirmed this although doctor admitted an ALP reading of 330 would not normally have raised his interest. More x rays, bone scans etc. which indicated he had the disease in many parts of his body with the knee most troublesome. A visit to an endocrinologist confirmed all this, but he (specialist turned out to be less than helpful. There followed more years of pain, pills and an arthroscopy. He moved from using a stick to using an electric scooter as walking became more and more painful. Sleeping was difficult, he was in pain within 10 mins of lying down in bed. Pain relief was increased to a 10mg patch Norspan once a week plus osteopanadol and endone. I finally persuaded him to return to another endocrinolgist who suggested Aredia infusion. He had this 4 days ago & is almost pain free but given his age 82, is a little more confused than normal. We hope he will settle as he is now talking of taking short walks. He has also been given Lyrica to try if needed and is continuing to use his patch. I am so hopeful this treatment will give him some pain free time. thank you WE are from England originally migrated to Australia in 1950

Related Reading: arthritis | arthroscopy



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Suggested Reading on Paget's Disease by Our Doctors

  • Related Diseases & Conditions

    • Congestive Heart Failure
      • Congestive heart failure (CHF) is a condition in which the heart's function as a pump is inadequate to meet the body's needs. A poor blood supply resulting from congestive heart failure may cause the body's organ systems to fail, leading to a weakened heart muscle and fluid accumulation in the lungs and body tissue. There are many diseases that can impair pumping efficiency and symptoms of congestive heart failure including fatigue, diminished exercise capacity, shortness of breath, and swelling. Treatments include lifestyle modifications, medications, heart transplant, and therapy.
    • Headache
      • Headaches can be divided into two categories: primary headaches and secondary headaches. Migraine headaches, tension headaches, and cluster headaches are considered primary headaches. Secondary headaches are caused by disease. Headache symptoms vary with the headache type. Over-the-counter pain relievers provide short-term relief for most headaches.
    • Arthritis
      • Arthritis is inflammation of one or more joints. When joints are inflamed they can develop stiffness, warmth, swelling, redness and pain. There are over 100 types of arthritis including osteoarthritis, rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis, lupus, gout, and pseudogout.
    • Fracture
      • Fractures occur when bone cannot withstand the outside forces applied to the bone. Fractures can be open or closed. Types of fractures include: greenstick, spiral, comminuted, transverse, compound, or vertebral compression. Common fractures include: stress fracture, compression fracture, rib fracture, and skull fracture. Treatment depends upon the type of fracture.
    • Paget's Disease of the Nipple
    • Cauda Equina Syndrome
      • Cauda equina syndrome is a medical emergency condition that is caused by the uncommon compression of the nerves at the end of the spinal cord. Symptoms of cauda equina syndrome include lower back pain, tingling and/or numbness in the buttocks and lower extremities, bowel or bladder incontinence, and weakness in the legs. Causes of cauda equina syndrome include herniated discs, hematomas, or infection. Treatment is generally prompt surgery.
    • Blindness
      • Blindness is the state of being sightless. Causes of blindness include macular degeneration, stroke, cataract, glaucoma, infection and trauma. Symptoms and signs may include eye pain, eye discharge, or the cornea or pupil turning white. Treatment of blindness depends upon the cause of the blindness.
    • Deafness, Hearing Loss
      • Hearing loss (deafness) may be present at birth or it may manifest later in life. Deafness may be genetic or due to damage from noise. Treatment of deafness depends upon its cause.
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Symptom Checker: Your Guide to Symptoms & Signs: Pinpoint Your Pain


Paget's Disease

What is cauda equina syndrome?

Cauda equina syndrome is an uncommon compression of the nerves at the end of the spinal cord within the spinal canal. The terminology, "cauda equina," literally means tail of horse and refers to the normal anatomy of the end of the spinal cord in the low back where it divides into many bundles of nerve tracts resembling a horse's tail. Compression of the spinal cord at this level can lead to a number of typical symptoms of the syndrome (low back pain, sciatica, saddle sensory changes, bladder and bowel incontinence, and lower extremity motor and sensory loss).

What are the causes of cauda equina syndrome?

Cauda equina syndrome can be caused by any condition that results in direct irritation or pinching of the nerves at the end of the spinal cord. Causes of cauda equina syndrome include herniation of lumbar intervertebral discs, abnormal growths (tumor or cancer) adjacent to the ...

Read the Cauda Equina Syndrome article »




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