How long should a first visit to a rheumatologist last?

My GP ran blood tests as I have been experiencing excruciating pain in my wrists, fingers and hands since July 2011. I have several swollen fingers on both hands, mostly the index and ring fingers. I also have occasional pain in my ankles, knees and hips, especially around menstruation. My blood tests came back positive for rheumatoid factor and raised ESR. I was referred to the rheumatologist and was finally seen just before Christmas. He asked what my symptoms were and told me immediately I did not have a rheumatic condition. He gave a quick physical check and he told me I had carpal tunnel, flat feet and discharged me! I can't help thinking more checks should have been done. I've been in awful pain and broken down in the GP's office due to pain and frustration. My GP has suggested I should go privately to another rheumatologist as he believes I have Ra. I hope I don't have Ra but is this normally how a diagnosis is made?

20 Replies

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  • I would have thought if you are sure you tested positive for rheumatoid factor that you have RA, that's how I was diagnosed. I think at along with your symptoms and raised inflamm in blood.

    Well, having said at I am not a doctor and wouldn't presume to second guess, but from what you have said, I would get a second opinion, even if you have to pay .

    Good luck, Gina.

  • Strange one, if you've tested positive why is this consultant being so funny?

    It could be because you state the pain in your other joints is occasional and he didn't see any damage/swellings or he wrongly got the impression it doesn't bother you.

    Perhaps he was having an off day, but that's no excuse for him taking it out on you or other patients.

    As for you doctor suggesting you pay... Why should you pay to go private, your doctor can and should refer you to another Rheumatologist for a second opinion.

    In the mean time has your GP prescribed anti-inflammitories and pain relief?

    If not go back and ask him if he thinks you should start on anti-inflammitories and get some painkillers if the pain is bothering you.

    Good luck, hope you get answers.

    Beth xx

  • Bizarre. Lots of us have had a long journey to get diagnosed as this is a sly disease, but like Gina I'd have thought if you have a positive RF that would have made the rheumy look carefully at you. What a lot of us have learnt is the art of pushing. I'd go back to your GP as the rheumy should have written to him/her with an opinion. If not ask your GP to contact the rheumy for a better explanation, and also ask to be referred for a second opinion (and also to a foot specialist just in case). Lots of docs will do that if you're somehwere where there's another consultant. I've not gone private, but I think a consultation would be about £100/£150 so if you can manage that then do think about it. Good luck. Polly

  • HI Pauly my first appointment lasted about 20 minutes and though bloods had come back positive for ra i was not showing any great inflammation. My hands were not a problem at that stage and the pain was quite sporadic and temporary.

    She was quite dismissive but thankfully they did give me another appointment for 9 months time because within 2 months I had a massive flare and was very disabled and the gp got the appointment brought forward.

    Surely you should not have to go private in order to get a second opinion - that seems very unfair. But in saying that i think you should get one you haven't really got a reasonable explanation of what is going on.

    good luck - the diagnosis of ra is a really difficult time but it would be great if you hadn't got it.

  • That is strange Pauly! My first appointment was about 30 mins (at least). I had tested negative on RF but had raised ESR and CRP. The rheumatologist pretty much diagnosed me based on my description of symptoms because at that stage the joint pain was flitting from joint to joint, and suggested an anti-CCP blood test which did come back positive so he confirmed diagnosis then. However at that first appointment he prescribed hydroxychloroquine and an anti-inflammatory then MTX a couple of weeks later with the anti-CCP results.

    It seems so strange that your consultant has been so dismissive especially with your results being positive - definitely get another opinion!

  • Thanks for your replies x my esr was 26 and i think my ra factor was 56. The gp gave me naproxen and omaprazole which really helped at first but then caused awful oedema so i had to stop taking them. My gp said he could refer me to a different rheumy but the wait would be at least another 8 weeks unless i go private. Am having bloodtests done again for ra factor, esr and thyroid ( am on thyroxine). Gp said he'll refer me once the result are back...again.

  • Pauly i had a three month wait for my first appointment - waiting times are atrociously long. I would take the 8 week appointment and then keep ringing them to see if they can fit you on a cancellation.

  • I forgot to mention. In the discharge letter the rheumy said i had no swelling or synovitis. I clearly do and everyone is amazed he could say this?

  • hi ... my first appointment was approx 30 mins ... i was diagnosed with RA and then sent for a MRI scan to see if any damage had been done to any of my joints ...

    But to be honest i knew i had RA by the symptoms ... so go back to your GP and get him to refer you to another rhuemy because as everyone knows the longer its left untreated it could do damage to your joints ..

    good luck and keep at them

    debs x

  • Hi my first appointment lasted 3 hours, but only because off weather conditions causing other patients to cancel.

    So I was lucky in one sense I basically spent the full day there 3 hours with rheumy then on for blood and water tests then xrays and mri scans.

    If I was you I would.go back to your gp and demand to see another rheumatiod doctor about this you have rights for a second opinion free on nhs

    So demand it and don't give in x Take care x Julie x

  • Thanks Julie, all the advice is really helping. Basically I felt battered and depressed before speaking to you all. Thank you.

  • Yes I went through much the same as you are going through now because although I got reffered (had a much higher ESR at 60 but a lower RF at 24) at my first rheumy apt I had very little to show for myself as was in aftermath of a steroid jab still so he said "inconclusive - come back in 4 months - I need to see you flare" which was very confusing because I'd already waited 4 months to see him. It was a horrible roller coaster but by the time I did see him I had swollen fingers and knuckles, wrists and one slightly inflamed knee and my GP had evidently written to him urging him to diagnose me and get me on some treatment before damage set into my hands. I haven't had an x-ray of them since June but I now can't bend my fingers on my right hand much and can't grip and my wrists are pretty painful 24/7 so the earlier you are seen and put on treatment the better - am shocked by the dismissal of this rheumy you saw?

    Each apt took about 20 minutes - he is so oversubscribed that we are considered lucky to get a slot with him and I would certainly never be able to get a second opinion up here where I live.

    So if that's an option for you (an apt with a different NHS rheumy) I would go for it asp and as others have said phone and see if cancellations come up as there are bound to be one or two. 8 weeks may seem a long time but it will go quickly enough and meanwhile get photos of all swollen joints to show the new rheumy consultant when you do get you apt. I did this and it really helped my case because chances are that you may not have much to show on the day so photos are really good. Good luck! TildaT

  • When I read your symptoms Tilda it convinces me even more that I have it. I did what you suggested and took photos of my hands this morning to show to the rheumy, I even took a mini video!! I too can hardly use my fingers now and my wrists are weak and painful. I had my bloods repeated by the GP yesterday so when they are back I'll probably get my private referral. I think I'll find the money to pay as I'm really worried about the damage taking place as I've been in severe pain since July.

  • I have RA and I wasn't happy with my original Rheumatologist as I didn't think he seemed to care very much, he was alway brushing my questions aside and the appointments were always very rushed and generally upped my dosage each time, and he didn't bother much with blood tests, I told my GP that I wasn't happy and she immediately referred me to Frimley Park Hospital which is one of the best in the country, my new Rheumy is fantastic, he immediately injected my most painful joints there and then, and completely changed my meds, I now feel like a new woman... plus he is quite good looking with a wicked sense of humour which is brilliant.. can't wait to see him again.

  • Hey Jan I see from looking at your profile you share the same surname as my husband! I looked to see whereabouts you lived to find out where this great and dishy rheumy is based you see! My rheumy sounds a bit like your first one although he's perfectly pleasant but just very pushed for time - not his fault though. I would have really liked him to give me some injections in hands/ wrists because no one else can administer these up here and I don't see him again until March. Suspect he won't have time anyhow if they are still bad.

  • I had 2 positive rheumatoid factors but my Gp said it wasn't a definative test as people with RA can often not have a low positive and then not have RA. My rheumy said they look at the whole picture not just the bloods. My diagnosis was confirmed by the scans showing excessive synovial fluid and some bone destruction around my toes and fingers, by the time I got my first RA jab my feet were so painful I couldn't bear them, luckily I work in the hospital where my RA nurse is based and our ward clerk (who has a sister with RA) sent me down to see her for advice, she was and is fabulous and got me sorted and 2 days later the pain was tolerable. I think Gp's are becoming better at early diagnosis though, the young doctors we have on our ward (ortho) seem to have a much better knowledge of the disease and its onset signs and symptoms than they did a few years ago so that bodes well for the future

  • It sounds like you've been very lucky and had very thorough care. I hope my next appointment can be more positive too. x

  • Hope so to, good luck x

  • I feel for you all because I looked at all these, and wow. I had my first appointment at the beginning of January, and I must admit i did not have to wait long, was referred on 21st dec, appt come through on 23rd dec for 5th January so just over two week wait, i had a hand x ray before i was referred and the GP diagnosed me before she referred by my x rays. Had blood tests as well, and my hands were deforming, i am now on my third week of mtx starting dose of 15mg and it can go up. Due to go back in April. Have had seroid injections as well, and the pain on my second appointment crap! I am lucky in that my rhumy was a nice person who diagnosed me on my first appointment about 20 mins, and it has been really quick to be honest. My Gp WAS not so good at the beginning of dec, threw some cream at me and told me to get lost, seeing another GP helped me, withthin three months, symptoms, disabledment diagnosis and treatment, if not happy with the doctor, change it, you are enititled to a second opinion. Taje it easy. x

  • Your care sounds excellent Jetblack. I wish it was the same for all. I have my private appointment booked for 2nd March as it has proved impossible to get one on the NHS. I hope you continue to improve now you have a diagnosis and the right treatment. Take care x

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