Young people with Pagets

[Andy-roo]

I broke my arm when i was 27 and was misdiagnosed with another condition, i was told six months ago that i actually have pagets which does run in my family, im now 31 and feel abit alone in my age bracket and was just wondering if there are other people my age with this condition as my consultant feels theres not many if at all.

[Hidden]

Sorry to read that after breaking your arm at the age 27 you were diagnosed with Pagets disease of bone. It is quite a young age to have Pagets' disease of bone. I was diagnosed with Pagets at the age of 47 which was considered quite young too at that time. I am now 65 and have had quite a bit of treatment which 'slows down' the Pagets and can give relief from pain.

[superdog843]

Andy -- please see my post / blog --> "Who is paget and what is he doing in my body" FYI, I was diagnosed at age 40, though I was "thought to have it" at 35.

[fenerbobslob]

Hi Andy,I was finally diagnosed at 44,but had hip and back pain for 10 years before that.The problem is G.P.s have the illusion that Pagets is only found in the elderly so would never test for it in anyone under 60.I was lucky that my G.P thought my hip pain was referred pain from my back which I had a history of slipped discs going back when I was 20,and sent me for an x-ray which showed the Pagets.I dont know who was more surprised!! At least there is treatment these days so keep your chin up.best wishes.fenerbobslob.

[superdog843]

I am not so sure how "experts" can say this is rarely diagnosed in people under 40 (or any age). Discovering this condition in any individual seems to be by chance. While a raised ALP blood test can allude to Paget's, it is not definitive. Plus, like myself, I was never out of an ALP blood range for almost 5 years...yet...I had the condition in my Pelvis. So, my thought is that it could be "slightly" more common than what is "confirmed diagnosis" in medical literature and databases.

[Tiasanders in reply to superdog843]

I agree with you, Doctors in my area seem to know so little and then they say things like Wow talk about rare. or the Cleveland Clinic who said we don't treat Pagets Disease like that was a good idea. You have to find a specialist.

[takka]

Hello , I had a jaw problem when I was 21 years of age,Tests done by the dental hospital showed signs of alkaline levels ...etc ie pagets ..but was not acted on..so diagnosis was not until a lot later aged around 40!!!!!When was told I probably had it most of my life.

[Andy-roo]

Thank you to everyone who posted back I was also told I had bone cancer a couple of months back so having to deal with that as well, thank you all for replying.

[Tiasanders in reply to Andy-roo]

Is the cancer from the Pagets Disease?

[Andy-roo in reply to Tiasanders]

Depends which Doctor you want to believe really as everyone seems to have a slightly different opinion on the subject, from what I have found out and researched I think your more likely to develop bone cancer from it, but i'm no doctor.

[Tiasanders]

I am now 58 years old, I was diagnosed at 50 but then lied to by my primary doctor for about 4 years. I think that mine came on in my 40's. I have felt alone at this age. Do find a specialist and don't let the doctors act like it isn't anything and have it checked out.

[Andy-roo in reply to Tiasanders]

Thank you