Paget's Association

Here I am a few years later from my last post

I was first diagnosed with Pagets disease in 2010 seven years later I feel like I still don't have enough information. I am having pain in my face, I am sure it is because my skull is getting bigger and pressing against the nerves. My right jaw cracks and so worried something going on with jaw. I have had ringing in my ears for 2 years now. I am scheduled to see a Endocrinologist in Warren MI in June, so hoping to get some more information. If anyone else is having or have been through this please any information is great.

8 Replies

Hi there

i have not yet been diagnosed with Pagets .My Gp was supposed to research and investigate for it at end of last year.I saw a Gp in June complaining of head pain and pressure and enlargement of skull which he put down as "a chronic headache".

My jaw is more forward and have changes to my cheekbones and nose as well.I also have enlarged hands and feet-2 shoe sizes bigger.

interested you are seeing an endocrinologist for it as i saw an endocrinologist last year and he confirmed the changes to my face but not in his area of expertise.

i know something is happening with my jaw because i can't drink from a glass without spillage and it affects eating and my speech and i can see just by looking it s"moved forward"-my whole face shape has changed.


Sorry rainbow you are still struggling but I thought your GP HAD tested you along with something else? I can't remember now what the other possibility was.

You said it was negative for both Padgetts and the other condition


1 like

he tested for cushings which came back as negative. .not investigated pagets.


I am in the same position-swollen head bones cheek bones and chin,one foot is larger than other,head pains ,stiff neck--specialist Dr Richard Keen says there are signs of Pagets (royal orthopaedic hospital)-I have not been prescribed bisphosphonate injections nor any thing else so far-hoping for appointment.


hello London1234

i saw my gp this morning re the same symptoms as you have and Pagets.Told her of symptoms how they affect me and with swollen skull etc and again got "you had a scan a year ago" -"yes i did and that was a year ago-and symptoms got worse since.she said Pagets is a rheumatology matter but she wouldnt refer me .

cant wait til next week -will she fob me off again re my abdominal symptoms!!!!!!!

had enough of all this (crap) from gp's


Have you been diagnosed with pagets now rainbow? Like paton I remember you posting on here that that tests for pagets came back negative last year. Has that changed?


It was my Osteoporosis consultant that diagnosed Pagets in my Sternum and has been treating me for that along with the OP, you should be seeing a bone team, not a Rheumatologist, wrong people for that, insist on a referral or do it yourself by ringing the hospital up every day until you get an appointment.


I did see a bone specialist in Gross Point MI and he is ordering a reclast infusion. I am hoping that this will help me a lot


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