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Rheumatoid arthritis diagnosis: What kind of tests did you undergo?

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Rheumatoid arthritis diagnosis: What kind of tests did you undergo?

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YorkshireJayne

27/01/2022 at 08:55

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I have lived with what I now know is RA for over 40 years; it has been fobbed off as osteoarthritis (at the age of 29) because my RH factor wasn't high and never has been. I have been told that it's good old fibromyalgia, when I know that it isn't and all kinds of medicines have been thrown at me, namely opioids and anti-inflammatories! The latter has damaged my stomach.

So, when my daughter tested positive for the HLA-B27 gene last month, I decided to ask my GP if I could have the blood test to determine whether she got that from me... A week later we found out that she did indeed get it from me, when my results came back as positive. I know that you can have the gene and not have autoimmune problems, but given that I have had joint, spinal and general body pain since I was young (4 or 5 initially) I'd say it was a safe bet that I do actually have RA or Ankylosing Spondylitis, or some other inflammatory disease.

So yesterday I had yet another blood test for my RH levels (They don't have to be raised to have autoimmune problems) before I can be referred to a rheumatologist. It's an absolute minefield is trying to get answers in the NHS, being referred to a specialist takes a GP, triage in the field and tests, then and only then, if triage deems it necessary will you be referred on. My GP has agreed to refer me directly to a specialist though, given the amount of time I have been struggling and that the gene indicates I'm more susceptible to those conditions.

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YorkshireJayne

03/02/2022 at 09:41

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@Diana55 All of the hospitals around us have rheumatology clinics, but our GP won't directly refer either of us without us being seen by triage first, and having a raised RH level. (See my reply to @PollyP above) My daughter is now waiting for an appointment with her chosen specialist and I'm waiting the outcome of yet more bloods (RH levels) so that my GP can refer me to the same specialist.

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Rheumatoid arthritis diagnosis: What kind of tests did you undergo? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/new-4515 2022-02-03 09:41:45

GILL18

03/02/2022 at 17:44

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Hi I was diagnosed in June last year but had been struggling with joint pains firstly in my wrists and my ankles it took 2 years to be seen by a rheumatologist and to start medication, my first medication was Naproxen. I’m still struggling and am now also on Sufalazine and Methotrexate.

My career as a Staff nurse in psychiatry came to an end sooner than I wanted and has left a huge void. I am now in touch with NRAS a support network for RA and hoping to move forward. Its a horrible disease which is not always visible to others.

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Rheumatoid arthritis diagnosis: What kind of tests did you undergo? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/new-4515 2022-02-03 17:44:48

Amanda23

03/02/2022 at 18:44

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I have been very lucky. My new GP picked up on the possibility of RA when she saw me for a very swollen wrist. I had been having problems with wrists, fingers, elbows and one knee for a couple of years. She sent me for xrays and blood tests straight away. My bloods came back with very high levels so I was referred quickly.

Fingers crossed I've been diagnosed early and the meds will keep the RA at bay.

I hope you, and your daughter, get sorted out soon.

Rheumatoid arthritis diagnosis: What kind of tests did you undergo? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/new-4515 2022-02-03 18:44:31

YorkshireJayne

07/02/2022 at 08:58

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@GILL18 41 years I've struggled with pain to varying degrees, beginning with my back at 21, followed by my joints in 1988, gradually worsening. My daughters are 40 and 35 and have suffered since they were young (7 and 4 respectively), my eldest was finally diagnosed with autoimmune conditions in her mid-20s and my youngest is still waiting for a diagnosis. My own "journey" (Hate that bandied about word) is at a standstill again now, Naproxen and other NSAIDs have messed up my digestive system and I have to take acid suppressors now. I would just love to be in a little less pain than I am, with less swelling, opioids don't even take the edge off it now and they have side effects! I know that it's going to be months before I'm seen by the professor I have asked to be referred to, but so long as I am actually seeing him, I can put up with a few more weeks of pain. I haven't been able to work since 2007, having been asked to leave my job as a cashier for Asda when I was spending more time off than I was there due to pain!

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Rheumatoid arthritis diagnosis: What kind of tests did you undergo? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/new-4515 2022-02-07 08:58:47

YorkshireJayne

07/02/2022 at 09:03

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@Amanda23 It just takes that one GP doesn't it? The amount of doctors and specialists who have just brushed it off as something else is ridiculous. Hopefully with us both having the gene HLA-B27, it will make them look into it all further. I know that RH levels don't always show as raised and X-Rays don't always show what needs to be seen, with any autoimmune problem, doctors need to look beyond those now. They need educating on the signs and symptoms; it's a beggar when a patient tells a doctor what they should be doing isn't it?

I hope your meds keep you relatively pain free and that it has been caught early. Thank you for your good wishes.

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Rheumatoid arthritis diagnosis: What kind of tests did you undergo? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/new-4515 2022-02-07 09:03:13

Pippadog

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02/05/2022 at 13:14

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I was diagnosed with RA zero neg in the 90’s by a Rheumatologist after a series of blood test, X-rays, bone density test, Liver scan (gall stones found, these removed.) prescribed gold injections, sulfazaladine and mexatrexate. ( hopefully spelt correctly) later I had intravenous drugs but they were not successful. Fibromyalgia was diagnosed during 2009.

Rheumatoid arthritis diagnosis: What kind of tests did you undergo? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/new-4515 2022-05-02 13:14:04

YorkshireJayne

03/05/2022 at 09:35

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@Pippadog I still don't have a diagnosis, still waiting to see a rheumatologist, that's the NHS for you. One has rejected me because my bloods weren't showing the right levels of whatever and even I know that bloods don't have to show what they want to see, to have a diagnosis of RA or any other autoimmune condition. I last spoke to my GP last week, she has re-referred me to MSK triage, which means I'm back to the start, yet again! But I'm not giving up, I need the right diagnosis for the right treatment, other than opioids.

As for fibromyalgia...eugh! Sorry, but it annoys me does the mere mention of the word. I was told that I have that in 2010, even though it was proved wrong with an MRI showing severe disc problems in my neck (I had presented with arm pain mainly and other stuff which go along with being in pain 24 hours a day) a few months later. It seems to be the go to answer for a lot of doctors who can't be bothered to look into someone's pain and get to the bottom of it properly.

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Rheumatoid arthritis diagnosis: What kind of tests did you undergo? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/new-4515 2022-05-03 09:35:28

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Deni1968

22/06/2022 at 19:54

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@YorkshireJayne I feel the same about "fibromyalgia"! Exactly as you say , it's an easy way when they can't be bothered to look into what people are telling them.

My rheumatologist wanted to repeat my ccp antibody test (it came back positive again) along with crp raised .

He said he will see me in 4 months to talk about "fibromyalgia". No thanks, I'm going to ask to see someone else.....

Rheumatoid arthritis diagnosis: What kind of tests did you undergo? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/new-4515 2022-06-22 19:54:56

YorkshireJayne

23/06/2022 at 08:20

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@Deni1968 Good grief! I don't blame you for seeking a new one. My daughter has finally got an appointment with one of the top arthritis clinics in the country, Chapel Allerton in Leeds. She has been struggling with pain since she was 4 years old, and had had every diagnosis possible, until finally an MSK triage doctor, did gene testing and discovered she has the gene connected with a lot of autoimmune conditions, including Ankylosing Spondylitis (HLA-B27). I contacted Professor Paul Emery, the top man in autoimmune conditions, he agreed she needed referring to one of the clinics he runs. We asked our GP to refer her, that was a farce with a lot of 'I don't know if I can' answers, but she sees someone 22nd July!

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Rheumatoid arthritis diagnosis: What kind of tests did you undergo? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/new-4515 2022-06-23 08:20:35

Deni1968

23/06/2022 at 15:23

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@YorkshireJayne I guess it pays to insist where your health Is concerned.

I feel invisible sometimes and I was starting to think oh well I'll just live with the pain but I'm going to get plod on and hopefully get sorted

Rheumatoid arthritis diagnosis: What kind of tests did you undergo? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/new-4515 2022-06-23 15:23:16

YorkshireJayne

24/06/2022 at 08:05

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YorkshireJayne

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@Deni1968 I totally agree with you there and it's down to the ones who think themselves into every conceivable illness or disease, wasting their time, which makes it hard for genuine people like us!

I was re-referred to MSK triage by my GP to begin again, I've been trying for 35 years to get a proper diagnosis for my problems. It now helps that I too have the HLA-B27 gene, so I thought he would refer me for an MRI, which is standard practise for people with the gene. I ought to have known the outcome, when I discovered who was doing the appointment... a flipping physiotherapist! The outcome? "Lose weight, come off your meds, stop having the steroid injections and get some physiotherapy" I was so angry! So now I'm back at square one and waiting to speak to my GP 2nd July... BUT I will keep on until someone, somewhere sees that there is something else causing my problems other than old age and "wear and tear"(That's another goody!)

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Rheumatoid arthritis diagnosis: What kind of tests did you undergo? https://www.carenity.co.uk/forum/rheumatoid-arthritis/living-with-rheumatoid-arthritis/new-4515 2022-06-24 08:05:00

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