Anyone with rheumatoid arthritis can advise me please

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JenniferB27
JenniferB27 Member Posts: 74
edited 5. Aug 2017, 04:53 in Living with Arthritis archive
Hi I'm wondering if anyone who has rheumatoid arthritis can help me. I already know I have osteoarthritis in my knees, thumbs and neck. I have been tested twice with bloods for rheumatoid arthritis but comes back negative. I get a lot of swelling and throbbing not only where my osteoarthritis is but in my wrists, fingers, knees the worst is my hand. It seems to flare up quite often making me poorly and extremely tired ridiculously tired. I get quite shaky and sweaty and my consultant just done blood tests and I have been told they were negative. I was then told it could be a false negative? I'm confused so just wondered if my symptoms sound like rheumatoid arthritis and what other tests can they do. I am so frustrated.

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  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    I have RA and have had for far too many years.

    I can see where you're coming from with this and, in your situation, I'd be wondering too. Yet more than one test has come back negative.

    I'm wondering who your 'consultant' is. Is it a rheumatologist? An orthopaedic surgeon? Or even (as I think you've mentioned nerve problems before) a neurologist? If you are seeing a rheumatologist then there is some concern that you might have RA or some other inflammatory form of arthritis. Remember there are loads of kinds. Otherwise the rheumatologist would have told you you have OA and discharged you. Other consultants might just have done one or more blood tests and concluded you don't have it.

    Unfortunately, no one test is conclusive. There are different tests and different forms of inflammatory arthritis. Some will give a negative result for the more usual test. Even RA can give a negative result. It's all very complicated. Try reading here http://tinyurl.com/y9ut3z5y .

    If you are under a rheumatologist I can only suggest you take photos of any swellings and keep a diary of symptoms ready for your next visit. But I'd also suggest you try not to overdo things. Any kind of arthritis reacts to overwork and stress.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hi, I have a sero-negative form of auto-immune arthritis, i.e. I do not test positive for rheumatoid factor but my inflammatory markers were always very high. I have gone on to develop OA thanks to the damage caused by my first one, my GP deals with that and ignores my psoriatic arthritis, my rheumatologist deals with the PsA and ignores the OA. There are many kinds of auto-immune arthritic conditions of which RA is only one - I know of someone whose rheumatologist regards her as having sero-negative RA: the arthritic world can be complicated. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
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    I am positive rheumatiod Factor , but the question is Osto is wear & tear & not inflammation , with RA you can get heat & redness in a joint & which was the first sign I had RA

    You got something going on which is not Osto & hope the find out soon what is going on
  • JenniferB27
    JenniferB27 Member Posts: 74
    edited 30. Nov -1, 00:00
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    Thank you so much for your reply.
    I was initially discharged by rheumatologist as having OA but because of the swelling and pain and in fact I took photos and showed them that they co ducted more blood tests. I'm not sure if OA would cause me to swell like I do and feel ill if that makes sense. I have been referred to IMATT clinic whichbis a new clinic I believe where doctors and physio work together. They referred me for my neck pain and I have an appt to discuss my results on 14th. I have started to record my pain to discuss with them. Feel like I'm overreacting a bit tho lol x
    I have RA and have had for far too many years.

    I can see where you're coming from with this and, in your situation, I'd be wondering too. Yet more than one test has come back negative.

    I'm wondering who your 'consultant' is. Is it a rheumatologist? An orthopaedic surgeon? Or even (as I think you've mentioned nerve problems before) a neurologist? If you are seeing a rheumatologist then there is some concern that you might have RA or some other inflammatory form of arthritis. Remember there are loads of kinds. Otherwise the rheumatologist would have told you you have OA and discharged you. Other consultants might just have done one or more blood tests and concluded you don't have it.

    Unfortunately, no one test is conclusive. There are different tests and different forms of inflammatory arthritis. Some will give a negative result for the more usual test. Even RA can give a negative result. It's all very complicated. Try reading here http://tinyurl.com/y9ut3z5y .

    If you are under a rheumatologist I can only suggest you take photos of any swellings and keep a diary of symptoms ready for your next visit. But I'd also suggest you try not to overdo things. Any kind of arthritis reacts to overwork and stress.
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    Feel like I'm overreacting a bit tho lol x


    No, you're just being naturally, and sensibly, concerned.

    Don't quote me on this but I think an MRI scan can show whether damage is due to RA or OA. I'm not sure about that but worth asking when you see them.

    IMATT? That's a new one on me. What do the initials stand for?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • JenniferB27
    JenniferB27 Member Posts: 74
    edited 30. Nov -1, 00:00
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    IMATT is intermediate Musculoskeletal Assessment Treatment Team. It is a new service I do believe. They are made upnof a team if Doctors a d physiotherapists. They referred me for the MRI and blood tests. It's confusing as I thought I would go back to my consultant but I guess he gave me my OA diagnosis and referred me back to GP. There seems to be a lot of passing around. I feel like I'm bothering the GP with every new pain and swelling I get. For example last week had an awful pain all the way down the outside of my right leg and lower back niggles. They will think I'm such a hypochondriac and it puts me off contacting them.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    A rheumatologist will discharge you to the care of the GP because they do not deal with OA. I spent 2001 being bounced between orthopaedics and rheumatology because neither felt I was their pigeon. I was eventually given a diagnosis which ran along the lines of unspecified auto-immune inflammatory arthritis (and began the meds) but it wasn't until late 2006, when my soles and palms developed a bout of pustular psoriasis that the medical penny dropped. The label changed but the meds did not and I get by well enough.

    I think Sticky's advice is good - keep a record of inflammation, tiredness and pain levels so that whoever you see has a more rounded picture of what is going on with you. I used to think I would remember everything but once in the consulting room my mind would go blank! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • pot80
    pot80 Member Posts: 109
    edited 30. Nov -1, 00:00
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    I started out with a polymyalgic reaction to sero negative RA. and I was totally wiped out for a few weeks and confined to bed unable to lift my arm to turn the bedside lamp on or off and also unable to bear the weight of the bed blankets etc. So a negative re-action to RA could call for further investigation.
    Best of luck and I hope things pan out for you.
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    Thanks for the info on the initials.

    I don't think you're being passed around. As DD says, if a rheumatologist thinks it's not an autoimmune arthritis they don't treat it: it's up to the GP. However, in your case you've been referred to this useful-sounding clinic. I hope they can help but, as I said, they might also be able to tell you more about your scan.

    It's reasonable to ask about new, unusual pains. I confess I just tend to feel it's more of the same :roll: but I've had much more experience (alas :lol: ) of the vagaries of arthritis than you have. And not every pain is due to arthritis. However, I think your clinic will prove useful there as well. I hope so.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright