Hi. Did anyone else have problems getting diagnosed? My Gp is basing my diagnosis on the fact I have a negative RF.

[sezza]

My inflammatory marker was, however, high, but this doesnt seem to make a difference. X

[earthwitch]

Have you seen a rheumatologist? GPs might be able to give a preliminary diagnosis, but its a rheumatologist who will confirm it, as it is their specialty. If you are seronegative its particularly important that you do see a rheumatologist, as it may in fact be spondyloarthritis rather than RA (both are forms of inflammatory arthritis) and spondyloarthritis is treated slightly differently as many of the RA drugs don't do anything for it. GPs are notoriously bad at picking up spondyloarthritis, though it is an awful lot harder to diagnose as there aren't blood tests that will conclusively diagnose it.

If you haven't seen a rheumatologist, then do insist that your GP refers you, especially if you have high inflammatory markers.

[sezza in reply to earthwitch]

My doctor won't refer me. He got someone else to call me today, to tell me I have reactive arthritis-and he hasn't even seen me since my symptoms got really bad, so he hasn't even examined me. X

[Elphabafromcornwall in reply to sezza]

This is so annoying! I was 18 months with a FIBRO diagnosis from my GP who REFUSED to refer me - he told me the guy I had asked to see was retired (lie) and that he would only treat me with the same meds (lie) I emailed the specialist in question direct (just googled him) and he advised me to speak to a different Dr in the practise which I did and then - traaaa! Referral and diagnosed with RA and different meds. I have to say that is where my optimism ends as I don't feel very cared for by anyone really. But try a different Dr in your surgery - they may refer you - it is just a GP cost cutting measure not to refer I think

[sezza in reply to Elphabafromcornwall]

I'm bullying my gp lol. If he refuses to refer me, I'll refuse to see him again, and get registered with a different one. He actually diagnosed me with fibro some years ago. X

[earthwitch in reply to sezza]

If you have reactive arthritis, then you really do need to see a rheumatologist. Get in touch with PALS and ask them if there is anything you can do about not being referred.

[helixhelix]

Huh! Sadly this is all too common, and it can take ages. I'm sero negative too and it took several goes at my GP before I got referred. But even stranger for your if GP thinks you have reactive arthritis, as that can be helped by a rheumy.

Personally I'd push hard to get refered. The NICE guidelines say you should be referred if you have persistent synovitis (which means a hot swollen joint) in more than one joint, especially if in hands or feet. And especially if it's lasted more than 3 months. So if that fits you then make sure you tell them. And 30% of people with RA are seronegative.

Inflammatory markers can be high for lots of other reasons, and I wouldn't wish RA on anyone. But if you have morning stiffness of more than 30 minutes, swollen joints (especially symmetrical in hands & feet) and pain then the sooner you get treated the better so don't take no for an answer. Polly

[sezza in reply to helixhelix]

Thanks Polly. I've had pain and stiffness in all my fingers & both thumbs, as well as wrists, knees ,ankles and toes, for several months, but its been really bad for 2 months. My blood test showed that I am slightly anaemic, and I'm not sleeping well. And I generally feel like crap.

I've decided to see the doc who first suspected I have RA. X

[Barrister]

Hi Sezza, I too am sero negative. It took 6 years of excruciating pain in my feet before I was diagnosed (although I have found out it was originally the wrong diagnosis, but along the right lines!) I wish that I had realised years ago because I had surgery on my spine 15 years ago and have been suffering much longer but never linked this with my feet and hands and hips and knee........Nobody else put 2 +2 together either, unfortunately. But now I am hopeful that soon(?) I will have less pain once I can start medication. So my advice is ask to see a different GP in your practice and politely, but firmly list your symptoms, results of tests etc and ask for a referral to a rheumatologist. Remember, everyone is entitled to a second opinion, even with their GP. Good luck, Clemmie

[sezza in reply to Barrister]

Thanx clemmie. My doc thinks I'm neurotic coz I read up on RA, even though I did so after one of his colleagues said she suspected it. I've thought of trying NSAIDs even though I'm asthmatic. I certainly do not want another fall in public; I fell on a bus 3 weeks ago (my leg still hurts from that). I'm going to see the doc who helped by ordering the bloodwork next wednesday. X

[Hidden]

Hi Sezza. Sorry you are stuck with an uncooperative GP. Mine referred me on the basis of my blood results (a low positive RF and high inflammatory markers) but it still took nine months to get a firm diagnosis and treatment. One of my husband's work colleagues is sero-negative and the same GP took a year before he would refer her so I know this happens. In our area I know that GPs can get given a hard time by consultants for being too ready to refer. I'm struggling with my GP now to get him to refer me to a neurologist so I know how frustrated you must be feeling. However if you can see another GP and show them swollen knuckles or toes or anything that is painful and visibly inflamed - or show them photos of swollen joints - this should get you referred because as Polly says, 30% of people with RA are sero-negative and that's not a small proportion!

Some will say that it's better not to get a diagnosis of RA -and at least reactive Arthritis goes away in time - but personally I think there are so many other equally serious autoimmune conditions that it is good to be referred to specialists when there's any doubt at all. Good luck. Tilda

[sezza in reply to Hidden]

I have decided to see the doc who initially suspected RA, as I feel she knows more about the condition. I can't see her til next week, so gonna take a low dose NSAID in the meantime. I'll get some ibuprofen or something. It's great to find people who understand my frustration. Thanks. X

[Hidden in reply to sezza]

That sounds sensible - but if you find NSAIDs work then you should take a stomach protector with them or get the liquid/ coated ones so less aggressive on your stomach - especially as you will probably need them for some time. Also do please photograph swollen looking joints before taking them - and even get blood tests for inflammation taken first. They can really mask the symptoms - even ibuprofen can I found. Good luck and let us know how you get on next week. TildaT

[sezza in reply to Hidden]

I take Omeprazole anyway for acid reflux, so should be ok. Just worried abt my asthma with ibuprofen. X

[Hidden in reply to sezza]

You could always use the gels for the time being - they work well for many people and aren't as risky for asthma etc? Tilda x

[sezza in reply to Hidden]

Yeah good idea, thanx. I've also got some heat gel but not sure that would work. All the docs at my surgery are having the afternoon off...hopefully to attend a seminar on RA lol. X

[Hidden in reply to sezza]

Stick to Ibuleve - I wouldn't touch the deep heat one it may just make things worse!

[Shell1967]

Hi I am also rf negative but my doctor referred me to a rheumatologist based on my symptoms,high esr and doing the squeeze test on my hands and feet.at my 1st appt with the rheumatologist he did lots more blood tests which confirmed my diagnosis,hope this helps Michelle xxx

[sezza in reply to Shell1967]

My doc hasn't seen me yet, but one in the same surgery is sure I have RA, so I'm going back to see her nextweek. X

[saffron07]

I'm sero negative RA, took many months then I had ultra sound and X-rays which confirmed disease.

Hope you get the support you need and access to treatment but that's not an end all and be all to it x

[sezza in reply to saffron07]

Its the beginning of the next stage of the journey, I know. I'm just sick of doctors thinking I'm neurotic just because I checked my symptoms, even though one agreed with me enough to ask for blood tests. X

[earthwitch in reply to sezza]

I got that too - had a skin specialist convinced I had lupus, and told me to read up about it, then I got slammed by other doctors for having done so.

[sezza in reply to earthwitch]

Its annoying. We want to know what to expect before diagnosis, so we are prepared. I don't have the symptoms for reactive, but I suspect my own gp has chronic cba-can't be arsed! X

[sezza]

Do any of you know of reputable companies that sell gizmos & gadgets to make life easier please? It hurt just now to hold a plain spoon to eat curry. X

[saffron07 in reply to sezza]

Not sure of your area but your GP needs to be referring you to rheumatology, they can ask for adult social services to assess you at home then supply you with adaptions to support you. If your working you can request a back to work assessment again assessing your needs. Good luck x

[sezza in reply to saffron07]

I'm going to call my surgery tomorrow and ask to speak to a different gp, hopefully one who has a real degree, not a cereal packet prize. One who will not only refer me, but will prescribe something to reduce the inflammation. I am so fed up. X

[Hidden]

Hi sezza,

I'm shocked that your GP won't refer you with high inflammatory markers. Are your joints visibly swollen? The S factor campaign has been promoted to GPs for earlier diagnosis which tends to lead to better outcomes for patients but clearly it's bypassed your GP! nras.org.uk/about_rheumatoi...

I had a slightly raised CRP at diagnosis, high ESR and negative rheumatoid factor which put even more doubt in my GP's mind but still, I got referred and I was sent for scans which showed inflammatory arthritis - later dx'ed as RA with a positive RF. Classic RA is not as common as you'd think, we all seem to have our own course of the disease. Please be careful with the NSAIDs and asthma, I know someone who ended up in intensive care due to their asthma after taking NSAIDs without a doctor's knowledge.

Do keep pushing for a referral.

Take care.

[sezza in reply to Hidden]

In my fingers, thumbs, ankles and big toes I do. The gp who gave me the results wouldnt tell me which marker was used, just that its high. I don't want to use NSAIDs for that reason, but the pain is getting me down. X

[Someonesmother]

Oh Sezza I understand how you feel. I was finally diagnosed recently seronegative and it was a long long journey. Keep pushing back and don't ket them bully you, it was the only way I got listened to and yes I was told it was all in my head. Really? Felt like it was in my joints to me!

[sezza in reply to Someonesmother]

I am actually on the phone to my surgery now, to further annoy the doctor into referring me. If he insists I have reactive, I'll just be like, fine, so refer me, so a rheumy can treat me accordingly. Then the rheumy can give me a true diagnosis. X

[sezza in reply to sezza]

Once again, my own gp got someone else to call me, this time to say he needs to see me so he knows who to refer me to. I'm like, tell him no thanks, I'll see the doc who suspects I have RA, Whether seronegative or positive. If he can't be bothered to call me himself, I can't be bothered to see him, simples.

RA could have a silver lining: it hurts my fingers to bite and pick my nails lol. X

[Someonesmother in reply to sezza]

Yay good on you. It is a shame we have to get to the cranky stage but no one deserves to be treated like a head case when they aren't.

[Chanel47]

Hi Sezza

I finally got diagnosed with RA 2 days ago after my GP finally referred me 6 weeks ago to see a Rheumatologist. I had been back and forth to my GP for the last 3 or 4 years with pain in my hands and feet, this past year pain, swelling and stiffness has spread to my ankles, wrists and knees and I have felt so ill and exhausted. I have struggled at home and at work with the tiredness, pain and stiffness for so long, I felt as if I was going mad, nobody could understand and I began to feel as if all I did was whinge and complain, my GP previously diagnosed depression! When I finally got to see the Rheumatologist this week he examined me and diagnosed RA straight off, my left ankle was so bad he said my Achilles tendon was about to rupture and put me straight in a huge support boot for next 6 to 8 weeks. I had steroid injection there and then and start Methotrexate injections next week. I feel so relieved to finally have a diagnosis but so angry that its taken so long to happen and that I have gotten this bad that I am stuck in this horrible boot for weeks which I find so dehabilitating.

I just cannot wait to start feeling better once medication kicks in, Hopefully.

So keep on pushing them!

[sezza in reply to Chanel47]

I had another date with the vampires on thursday, so should get results this week. The doc I saw said if my CRP, ESR etc are still raised, she will refer me. In all honesty I'll believe it when I see it, as the previous time I saw her, she said she would send me for xrays. As you can guess, that has not happened, so I'm wondering what excuse for not referring me this time will be. I could contact NICE or my local healthcare trust to see if I should have been referred on the strength of my symptoms and high CRP. My own GPs excuse for not referring? I'm seronegative!

What a joke! He thinks I don't read up on these things-then treats me like I'm a hyperchondriac when I tell him I have done. I just hope things move forward now. I'm on naproxen out of sheer desperation, though thankfully I've only been a little bit wheezy on it so far. X