Tips in Getting a Rheumatologist?

Supposedly my RA Factor is "Normal", but my doctors won't share what that number is. And because it's "normal", any referral sent out for a rheumatologist keeps being denied.

I am having severe hand pain, growths, and even deformities and nobody can figure out what it is. They don't know what to test or who to send me to. They're kind of brushing it off as "no idea, but learn to live with it".

All I want is a diagnosis. I understand if it's something that can't be cured or even treated or managed. I just want the closure of knowing the name of what's causing these symptoms. It's getting to the point where I'm having trouble using a fork or knife to eat with and not knowing only makes it worse.

So, even though my RA Factor is supposedly normal, is there another way to get to see a rheumatologist anyway? Do I have to cry like a child wanting a toy or something?

15 Replies

  • You have rights to see results and you could be ra seronegative which shows up with bloods normal, and you must state you need second opinion it's your right good luck I cry in pain all time but still ain't got right meds yet long process.

  • Hi there I'm seronegative but I have RA and Oa so don't let them fob you off because the longer you leave it the more damage it will do

  • Is there a way to tell or test to see if someone is ra seronegative? I do assume that I am given what I'm going though, but a self-diagnosis may not get treatment like a doctor-given diagnosis would.

  • Other forms of arthritis eg psoriatic arthritis look very similar to RA but have normal RA factor. Do you have any psoriasis? The two tend to go together.

  • I don't show any skin issues, which, as far as I've researched, is a signature symptom that makes or breaks a psoriatic arthritis diagnosis. I'm sure it's possible to have it without the skin symptom, so I'm not ruling it out, but I don't know enough about that particular type of arthritis to say yes or no.

  • I encourage you to seek a second opinion, preferably a rheumatologist, but even another GP.

    Many illnesses are difficult to diagnose, but one as painful and deformative as what you are experiencing deserves immediate attention. When we don't fit the "textbook picture" of an illness, doctors feel inadequate because they have nothing to offer. Also, take an advocate with you who can also fight this battle. They can ask questions or will hear things you may not hear. Best wishes to you.

  • Dumb question, but how can I tell someone can advocate for me properly? I've brought people to appointments before, but they end up letting me down if not making it worse. I'm advocating for myself the best I can, but there's only so much one person can do, obviously.

  • It sounds like your GP is 'gate keeping' your access to a specialist rheumatology appointment in an inappropriate way, and possibly in breach of NICE guidelines and the NHS constitution.

    RF is only one blood test for inflammatory arthritis (IA) and is not entirely reliable. 30-40% of people with rheumatoid arthritis (RA) have normal RF, and it is always normal for people with other types of IA, like psoriatic arthritis. There are more reliable blood tests - especially CRP and anti-CCP - but even these are normal for some people (like me). You have a right to your blood test results - you just need to ask for them and insist if anyone is reluctant.

    Because blood tests are unreliable, they are NOT part of the criteria for deciding to refer you. The NICE guidelines say you should be referred (and promptly - within 3 days) if you have persistent synovitis in the small joints of your hands and feet.

    It might be that your GP is sure you haven't got synovitis. Usually, it causes swelling and redness, so if you haven't got these, that may explain his/her certainty. But some synovitis can be low-grade and not very visible. My hands, for instance, FELT swollen but didn't look very swollen. The only way to be sure is an ultrasound scan.

    The NHS constitution says "You have the right to receive care and treatment that is appropriate to you, meets your needs and reflects your preferences". (It is worth reading this doc, since it sets out other rights too). It is not appropriate and does not meet your needs for your GP to be deciding whether or not you have IA; that takes a rheumatology specialist.

    I'm afraid you're going to have to be assertive! It's a skill lots of us have to learn to get what we need from doctors. I suggest the following plan of action:

    > Make an appointment with another GP if possible.

    > Ask the GP (new if possible or old if you have to) to explain clearly what they think is happening to your hands. Ask them why you have pain, why there are bumps and deformities. Ask them to explain any other related symptoms. It may be that someone can explain it all clearly so you understand and are satisfied. If they tell you it is osteoarthritis (which does not warrant a rheumatology referral) ask why they are sure. Explain again how much it hurts and what problems it causes. Tell them you are worried about inflammatory arthritis and say you would like someone to rule this out. If you are happy with all the answers, great! :D

    If you still are not happy...

    > Ask the GP (new if possible or old if you have to) directly for a referral to rheumatology. Say you are worried about the pain and deformities in your hands and think you might have inflammatory arthritis. If the GP has been unable to answer some of your questions, point this out.

    > If the GP says yes, job done :D If the GP says no, say you are worried you have synovitis in your hands and you understand that the NICE rheumatology guidelines say you should be referred to a rheumatologist in these circumstances.

    > If the GP says yes, job done :) If the GP says no, say then you would like further tests to check that. Ask for CRP and anti-CCP blood tests to check for inflammation and a hand ultrasound to check specifically for synovitis in your hands.

    > If the GP says yes, job on its way to being done - finally! ;) If the GP says no, say that you understand the NHS constitution says "You have the right to receive care and treatment that is appropriate to you, meets your needs and reflects your preferences".

    Say that it doesn't meet your needs or preferences to be offered no further investigations or second opinions when you have unexplained chronic pain and joint changes happening in your hands. Say something like "I really do want answers. Ideally, I would like these tests and a rheumatology referral. If you won't give me either, I will have to make a formal complaint".

    > Hopefully by this point your GP will have realised you won't take no for an answer!

    Advocating for yourself like this takes practice and is always exhausting. I have learnt over years and years. But I have realised sometimes it is necessary. I was fobbed off by my previous GP - I visited 8 times in 15 months complaining about hip and leg pain - and it turned out I needed a hip replacement! I have just been diagnosed with psoriatic arthritis after years of problems, and I have had to be very assertive to get the tests etc necessary... But that's another story.

    Good luck! Remember YOU are the expert on your own body - if you think something is wrong and no one can give satisfactory answers, keep asking!

  • hello again jcrawford thats exactly what i done,my usual rheumy that i usually see which was back in december told me there was nothing else she could do,to which i said well i will be going to see another consultant next time as i have ra and oa and in 2 years since i started with her my mobilitys worse ,my cronic pain is worse and i cant work as i need a stick to get around, so 6 weeks ago i had to get 8 kenalog injections in various parts of my joints, the new consultant coundnt believe the state i was in i had already failed 3 dmards,so now finally im waiting to go onto biologics which is 2 years 2 late because the damage is already done,hope you get on ok

  • hello ,what you are going through at the moment could have been written by me except my gp keeps referring me to a Rheaumatologist for sero negative arthritis .I get given a appointment then within a week it gets cancelled by the hospital ,just had it cancelled for the second time so got to go back to the gp again to listen to them say they have no idea why, I have sat there crying because of the pain in my hands and other joints ,keep getting offered pain meds when all I want is answers and my life back , xx

  • Thank you for your comments, They are very helpful,I will have to see how I get on, Seems a lot of people get fobbed off.I have to do something about it so wish me good luck.Thanks Trev

  • Many years ago I had to sit in my doctors office and say I can't go on, this is killing me,I need to see someone who can tell me what is wrong with me, I was absolutely desperate,I was wracked in pain with having about12yrs lots of bloods taken, to no avail ,I still had to wait 3yrs even when I had the re feral,but eventually it was psoriatic arthritis,all those years, that is why I never complain about methatrexate, even side effect though few they are with me because it saved my sanity,I know how you feel but go to your gp, and tell him you are desperate,you cannot be clearer than that, best of luck.

  • Hi healthygenes - You say you are one Methatrexate, is that the tablet form or the injection ? I have PA & AS. Thanks.

  • Hi claret an blue,I was on tablets and still am.

  • I have only just seen your post sorry,but yes you have answered your own question,I know it sounds utterly ridiculous,but basically that's what I had to do,I even went private,and that that person,(sorry I still get mad thinking about him)took my £120, and told me basicallyI it was in my head,he also said my heart etc was A,1 I said oh! right,what about the heart mmurmur then he said what heart murmur,I said the one I was left with after rhumatic fever at 3yrs old,he quickly ushered me out of the door,so yes to say I was desperate is about right,but you have to hound the life out of them,but if you already have a dia gnosis of Pa, then I don't know why you haven't got a consultant because it would be he who would have diagnosed you in the first place surely,

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