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Paget's Association

Family history of Pagets so what do i look out for?

My father had Pagets disease,thyroid problems and other conditions,i have just been diagnosed and started treatment for an underactive thyroid gland and my sister has lived with this for a number of years.As these conditions run in my family i think it might be highly possible i will follow in my fathers foot steps so can anyone please tell me what to look out for with the symptoms of Pagets,thank you in advance.

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Its Sore bones that you should be looking out for. If Pagets was in your leg (right shin in my case) the affected area would be hot and swollen after some impact exercise. I was also aware of intermittent mild cramping in the shin area. I have had treatment for the condition but still get the sensations as described above, only milder. It's not gonna stop me living my life though! Off skiing in January!

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I have been having lower back pain for some years,gets worse if standing,walking for a long time,mowing the lawn etc.I was sent for physio but this just made it worse so i left and recently started having pains in my feet.

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Lower back pain and foot pain could also be spondylitis.....please ask your doc about this

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I have an under active thyroid which I have had for many years, I have Pagets in my right shin, I found it got hot and I had a stabbing pain during the day if I walked too far or was on my feet for a long time. During the night it reduced to a dull ache. I was diagnosed with it and had an X-ray to confirm it about three years ago. So look out for the above symptoms.

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Thank you everyone for the replies,how is Pagets diagnosed ? can it be picked up in my Thyroid blood tests?

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Paget's disease may be identified by an x-ray, blood test for alkaline phosphatase (routine liver function blood test) or bone scan. See our website for more details. You can register free to view our Facts booklet and receive our regular newsletters. paget.org.uk Diana, Healthcare and Education Officer at the Paget's Association.

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i have a stabbing pain in my left thigh,its very sudden but only lasts a second but its now becoming more frequent.

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I don't know if it will be picked up in your thyroid blood test, but you can have a blood test for Pagets, as follows:

Blood test (measurement of serum alkaline phosphatase). Sometimes blood test results are what first alert doctors to the possibility that a person has Paget’s disease. When blood contains a higher-than-usual level of a chemical substance called serum alkaline phosphatase (SAP), it is a sign that the disease may be present.

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If you read the Pagets Association pages it will tell you all about the tests and diagnosis you can have, it explains it fully.

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My alkaline test is normal but bone scans show bone growth in various areas including skull. Is this possible?

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from what I have read yes. My alkaline phosphate does not run high but my femur and hip are both deformed. the Specialist I saw also said that the alkaline phosphate test is not always correct. My primary kept telling me I did not have Pagets disease even after the second radiologist found it. He kept saying he would know If I had it but he didn't from the alkaline phosphate test but the xrays should have let him know.

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Swelling in the sternum in my case.

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Swelling in the sternum in my case, but in my case, it was not correctly diagnosed until 25 years later when scanned for OP, fortunately it did not progress, but any swelling in the bones is worth checking out, these days people are more aware of Paget's, less chance an A&E nurse will send you away telling you "it's probably a boil".

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