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Karen’s Diagnosis was a Complete Surprise
Karen lives in Queensland, Australia. She enjoys swimming, reading and photography. Before retiring, she worked in administration. Karen shares her experience below. 

For some years I’d had various symptoms, including painful swollen fingers, facial and scalp hypersensitivity, tinnitus and pain on the left side of my face, which was increasing rapidly in frequency and intensity. 
In early 2019, then aged sixty, I presented to a locum doctor for an unrelated (to Paget’s) matter. The doctor took the time to read my medical history and asked me about the unexplained pain in various sites that I’d suffered for some years. He referred me for a full body nuclear scan. This, together with blood tests, confirmed Paget’s disease. I was also diagnosed with atypical trigeminal neuralgia (facial pain), which may be a complication of Paget’s. I was prescribed anticonvulsants, which in time, controlled the attacks of pain.
I then had an infusion of zoledronate, after which I was very unwell with flu-like symptoms for a couple of days. This included sweating, fever, weakness, aches and pains all over, particularly in my lower back, and my head felt weird. A couple of months after I had the infusion, I tapered off the anticonvulsants and I have not had any hideous pain attacks since. I do have some background aches in my face and head, but these are all now manageable without any medication.
The Paget’s diagnosis was a complete and unexpected surprise for me. I knew nothing of Paget’s, but I count my blessings that a locum doctor, that I had only one consultation with, was curious enough about the unexplained symptoms noted on my medical record to send me for diagnostic testing. I should add, that I haven’t had to give up any activities because of Paget’s.  

What would you say to anyone newly diagnosed with Paget’s?
- Join the Paget’s Association! It has been an excellent source of detailed information that is easily accessed.
- Take the advice of specialists (in my case, an endocrinologist) and become proactive in managing the condition.
- Take steps to improve your bone health, your diet and general health.


Karen's story was first published in the Paget's News Magazine.

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