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GP telling me to stand my ground with Rheumatology department

GP has confirmed I've got fluid in nearly every joint he's amazed I can still walk and haven't gone mad. He does not understand why the rheumatologist sent a letter saying I might not have RA as I don't have inflammation. He showed me a letter sent to the consultant by my occy health consultant it pulls no punches and says the rheumatologist needs to get his act together.

I really don't understand why I have been left to suffer like this I really don't apart from the fact the NHS is useless if you aren't a bog standard case.

It's not even as if they didn't say I had it originally. It seems more about not wanting to pay for more expensive treatment

8 Replies
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Hi Helzbells

It is good you have your GP and other health professionals standing next to you about this. You are not alone although when In pain and you can’t even get your underwear on, it feels like it.

Your story mirrors mine in many ways. A physio wrote to my consultants and told them to reassess me and treat the RD and to stop sending me to physio or OT as there was nothing they could do to treat the RD and that it was up to them.

I always worried he would get sacked. He was brave and so has your OT too.

The result for me was that I had a change of consultant, with the help of my gp, and I was put on Biologics. The new consultant showed me, on the Hospital computer, how my bloods, 12 months before, showed high levels of inflammation and I had a very high DAS score and proved all the DMARDS were not working and I should have been put forward for Biologics sooner. I had been left in agony with eroding joints by a consultant who, in the best scenario, did not appear to know what he was doing.

Perhaps he didn’t like his job anymore, I will never know, but he caused unnecessary suffering to me and it felt personal.

I am really sorry you are suffering like this. None of us should be in this situation. Have you considered a change of consultant? Or a second opinion in another Hospital? Or perhaps PALS again to show your situation has not been resolved.

Please let us all know how your story progresses.

BG

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Thanks BD.

I have been moved to this consultant from the previous one. I'm hoping he sees sense. The issue is what is causing such widespread fluid in the joints. No one can think of anything but RD

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The NHS doesn't seem keen unless you fit neatly into a particular pathway, and a have a full set of textbook symptoms. If you do fit it's great, if you don't you can have a fight on your hands. Rheumatology seems to lean towards this model more than most.

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I really hope that the new dr gets to the root of the problem quickly and helps you.

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Agree with that one cliffhopper. Denial of symptoms every other doctor can see also seems a favourite

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IdentRA (UK) or Jointstat (Canada) is the newest accurate test for RA. You might have to pay for it out of pocket, at least you do in Canada. This is because the government medical only pays for the anti ccp & RF tests....but if there is confusion in your diagnosis, this test should give you the final answer on RA or not RA. It only costs $50 in Canada, I can't see it costing more in the UK.

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Will look it up thanks x

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Same here...

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