No help from gp

[GrandadH]

Hi I’m new to this in 2009 the hospital thought I had Paget’s disease of the bone in my right leg which was not diagnosed properly until 2017 I know nothing of this disease only what I have read on the internet my doctor just said take alendronic acid tablet once a week tried asking him for more information but told nothing to worry about I’m in constant pain in my right leg from knee to the ankle does any one know where I can get more help from I feel like I’m banging my head against a wall with my doctor

[Eteck1]

Talk to a rheumatologist

[Hidden]

You are welcome to email The Nurse at the Paget's Association for advice - [e-mail]

[Hidden]

Hi there.I know exactly how you feel with doctors.Three years ago a GP thought I might have Pagets Disease but it remained a thought-he did not research or investigate it.In that three years my symptoms have got progressively worse-bone pain and deformities from my head to my feet and most recently nerve problems in my hands feet and right leg.Like you I have found information on the internet .I was referred to an Endocrinologist in 2016 who said whatever I have was not in his area of expertise leaving it open for further investigation but the GP did not follow this up.

I saw my GP three weeks ago and he said he would discuss it with another GP-but refused to refer me to a rheumatologist or bone specialist.When I saw him yesterday-he said he had spoken with the same endocrinologist I saw in 2016 for advice where to go next.

When I got home I remembered what the endocrinologist said and it was a few weeks ago that I told my GP that the endo had said it was not his area of expertise and he -the GP-looked at the decision letter and this time agreed -so now I am asking why has he contacted him now-he said it is an endocrine matter-I googled Endocrinology and it is all about hormones,.It is not this consultant but Rheumatologist or bone specialist I need to see.

Please ask for a referral to a rheumatologist ,I wish you luck with this.

[emerich in reply to Hidden]

Hi Rainbow, If you look into endocrinology a bit further you will find hormones can indeed be responsible for many health problems, including bone and tissue growth,so this could well be relevant to your issues. Might be wise to see an endocrinologist as your gp suggests.

[Pantoe in reply to emerich]

Yes, RA is due to just that, the Spleen I think.

[Hidden in reply to emerich]

The GP did not refer me to an endocrinologist -he had spoken to an endocrinologist

I saw an Endocrinologist in 2016 and after testing said it was not something in his area of expertise-my GP knows this because it was put in writing from the Endocrinologist and he has seen the letter twice -last time a few weeks ago,.It is not an endo problem and present with symptoms of Pagets Disease,

[Bart---No1]

Hi GrandadH

Go on the Paget's Association website and email or speak to the speccaillist nurse and they will advice you of your nearest Paget's Centre of Excellence and then get your doctor to do a referral.

It's the first steps in getting expert treatment.

I had a similar situation with Paget's in my right femur and lots of pain but I am now pain free, I have to travel 40 miles but it's been worth it.

[emerich]

Ok, when you said your gp said it was an endocrine matter, I assumed he would be referring you to the endocrinologist. I remember you said your gp had ruled out pagets quite a while ago, has something changed in your symptoms to make you or your gp think you might have it after all?

[Mandy5]

I agree wholeheartedly with Bart. We found the Pagets Association incredibly helpful and I would really encourage you to become a member. The information and support they provide is fantastic. We travel from Dorset to Stanmore for my husband’s treatment but it is more than worth it. The overview of a consultant at a Pagets Centre of Excellence is most reassuring. Once you have read up about your condition and chatted to the Association, you may be able to go back to your GP knowing the best way to request referral. Well done for finding this group anyway!