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: charmers, 55-64 Female (Patient) Published: July 13

I already had back surgery L4/5 titanium pins plate in and had dreadful pain every day even when taking narcotic meds. Something changed. I got muscle fatigue extreme, hard to walk or even stand, then came weird sensations on my head it is hard to describe maybe like pins needles. The doctor was right on the ball and I had tests for Paget's he was right, now I am filled with dread as to what next step is! I only just got results. That is why I am looking at this website, what is next!!!

Comment from: rrhouse123, 65-74 Female (Patient) Published: January 05

I am 66 years old I took a fall a couple of years ago and got a hairline fracture in my left hip, but I seemed to hurt all over in different areas at different times. I had trouble standing up straight and walking problems. They ran tests and found Paget's. Years ago I was in car wreck and crushed my pelvis, chipped 3 vertebrae in spine and other related problems, but I never had any trouble for over 30 years. Now all of a sudden I find I'm having all kinds of problems and a lot of pain. Due to stomach problems all I can take is aspirin and it really seems to help. I get a lot of migraines and my eyes seem to be bothering me a lot more. I was told this could turn into cancer.

Comment from: sriker, 45-54 Female (Patient) Published: August 18

My pain originated in my right hip area. I hurt in my groin and then in my pelvic area. I have Paget's in my right iliac wing. I was better for a while. I now suffer with pain on my entire right side, buttock, sciatic, hip, and groin. You name it, I hurt there if it's on the right side!

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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