I wanted to ask your advice as I am feeling a bit topsy turvy in this whole journey of getting a diagnosis and hoping you will at least be able to add some clarity.
So I have had all the blood test results back and everything is normal so the Rheumatologist sent letter back saying I have Polyarthalgia and probably Chronic fatigue. Trying to make sense of it all I went to see the GP who agreed that negative bloods means I don't have inflamatory arthritis but OA which can be inflamatory and so can have travelled from hips to hands and feet. OK I thought fair enough I am going to accept this diagnosis and get on with life.
But I've just been to the Ultra sound scan of hands and feet and although my hands look normal my feet do show synovial changes and the radiologist will write to the Rheumatologist.
I have become so confused looking online at what seronegative means. I've read that 30% of people are seronegative and have inflamtory joint disease... maybe it's not strictly RA but another strand? Ah sorry I don't even know what my question or point is anymore.
Thanks if you've read it all
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Stephpz
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I'm not sure that I can help you with this one but wanted to let you know that you are not the only one that finds some of this stuff confusing.
I am RF negative but inflammation markers were up. I've just had blood tests for sjogren's and my ENA was negative thus my SSA and SSB would be also negative but apparently that doesn't rule out sjogren's.... And I sit here, not for the first time in my RA journey, and quietly say to myself "what the **** was all that about then?"
My hand and feet X-rays (back in September) came back with no RA erosion but a small sign of OA on one toe so I celebrate that and the RA med regime is going well so again I celebrate that but still I do not understand seronegative etc and the implications... Maybe some one out there can give us a quick 'Seronegative for dummies' run down (dummies aimed at myself not you ).
The whole seronegative thing makes sense and then it doesn't. Thanks for replying. It seems many of you have been along this track and back a lot longer than I have. Daunting it is.
It can be complicated with everything else that's going on to understand all things RD. I'm seropositive so only learnt about all this relating to my specific diagnosis & of course my first Consultant in the early days only spoke of this in relation to me
Maybe if you asked your Rheumy or nurse to explain it, from the horses mouth so to speak, those who are looking after you & if you don't understand you can ask them to exlain a different way.
Hi Steph--- this whole ""thing"" is confusing to most people I would imagine- as in no two people seem to be the same. I am the same as you--- totally normal bloods in every way-- was told there was nothing wrong with me-- until the scan on my hands showed the inflammation. The scan report was sent to my rheumatologist -- she made an appointment to see me a few days later and diagnosed Rheumatoid Disease. ( seronegative) . I was actually relieved to get a diagnosis after years of being told """" my aches and pains were menopausal "" .
Yes I'm probably wanting to have it confirmed. It's depressing being treated like the pain is related to my head state or wear and tear. But mainly when I saw a surgeon about my hips he seemed very convinced I have inflammatory joints not OA. I guess I have to wait and see what the rhuem says now. Thanks for you input it's really appreciated.
The bloods are showing no changes,although with RA the condition does not need to show in the actual bloods themselves. I advise you to chat with your GP and He will explain it all to you as I am not a Doctor
Thanks Bob, I have to go through rheum first as she ordered tests. GP I saw on mon already thinks I Just have inflammatory OA. Maybe I do. I am no doctor either. Thanks.
It is a bit of a messy minefield as there isn't a specific and 100% guaranteed blood test that proves RA or any of the other 199 types of inflammatory/autoimmune conditions. So the specialists have to diagnose of the basis of your blood tests, your physical symptoms and how you say you feel. Which is great in theory but of course leaves a lot of room for misunderstanding and miscommunication between doctors and patients.
You can be seronegative for the RF factor and for the anti-CCP test and still have RA. Or of course you could have a variant of one of the other conditions like Ankylosing spondylitis. Sometimes it can take a couple of years for the symptoms to really show themselves. There are quite a few people on here who will probably be along in a minute who have never had a specific diagnosis but are still being dealt with under the heading of "mixed connective tissue disease" or "undifferentiated inflammatory arthritis". So don't get too focused on getting a specific diagnosis but concentrate on getting treated!
As basically if the ultrasound is showing signs of synovial changes then you do need to start jumping up and down and asking for explanation or second opinions. You don't want to risk damage if whatever it is you have could respond to treatment. So keep pushing.
Another lesson I learnt early on was to think about how I explained how I was feeling. A doctor said to me that if a patient said "I feel rubbish" or " I'm always tired" he basically ignored it as it's not a symptom he could relate to. But if people said "I have trouble sleeping because of pain waking me in the night" or "I have lost weight and have no appetite" then it meant something to him, so he paid attention. So write down your symptoms and keep asking for explanations. Good luck!
Thanks you are right. It's better to have concrete info for medical profession. I've experienced this with getting my sons autism diagnosed. I should know better. Good to be reminded!!
I have a diagnosis of RA, confirmed by a professor in the basis of photos of my hands when I was disgnosed in 2011. Now my hands are totally non rheumatoid looking apart from a bit of drift and a fair bit of early OA. I credit MTX and Hydroxy with this but haven't been on DMARDs for nearly 8 months.
I felt a complete fraud for ages but also have other recently confirmed autoimmune symptoms going on which often make me pretty ill. I have just read, thanks to a friend on here, about monocyclic RA - as opposed to Polycyclic. I think this is my label - it seems to suit me better than seronegative and my inflammatory markers are usually high.
Still my rheumy makes me feel as if I'm imagining everything and am just an over anxious woman getting through "the change" with lots of wear and tear. I guess compared to many he sees I have quite mild RA but rheumatic diseases go far beyond just RA and inflammatory arthritis. He should be looking at other sero negative autoimmune diseases.
I know a 20 year old woman who has lost one eye and the other is going. She has a diagnosis of JIA but has hardly had any joint pain at all apart from a brief episode when she was ten. The seronegative RA part sticks to her notes as the official diagnosis so that if it ever comes back it is the primary diagnosis despite all the attention quite rightly being on her eyes presently.
I was told I have seronegative RA despite a positive rheumatoid factor of 26 when diagnosed - because my anti CCP was negative. Now I'm going through similar stuff with neurology. A normal EMG and MRI almost made my neurologist renege on his first diagnosis of small fiber neuropathy until my lumbar puncture showed up autoummunity associated with immune mediated neuropathy.
I was told by the 2nd opinion rheumy professor that he ignores autoantibodies because if he could diagnose by these he would be out of a job! He also ruled out Lupus for me on the basis that as a post menopausal woman of 52 I would have organ involvement by now (lungs and kidneys).
He explained by now it would have stopped progressing where my symptoms are worsening. But I have five or six HU Lupus friends now who say this is nonsense - they all have sero-negative Lupus and firm diagnosis's with no organ involvement to date and four of these are post childbearing and their Lupus is progressing. It is a minefield for many of us.
All you can do is jump on and hold on tight and learn to trust your own instincts and fight your corner when necessary. Being well informed about your symptoms really helps I have found but doctors don't always like it!
Wow! It seems to be whole world of confusion out here. You should check out how whiny as mums we all get when we have to wait three years for our kids to get diagnosed. Seems with RA it just goes on and on with a new minefield at every turn. Thanks for sharing I hope you also find answers soon.
I think it's a case of who shouts loudest with all these things. I found it so much easier to shout about my kids than I ever have about myself - but I'm having to toughen up having learned the hard way that being mild mannered and friendly doesn't always achieve much where our health is concerned! Good luck to you too!
Quite right. My son was diagnosed 4 years ago now and I learnt to shout for him. Only took a couple of years. In some ways it's a good thing because once you get to the stage where you can say this and this and this are wrong so Help then you know for sure.
Ps check out Yorkshiregirl44's recent post on here re autism/ Asperger's.
Hi Steph, reading your post I wondered if the rheumatologist had given you a follow-up appointment and it might be worth calling the department if not? (especially now you've had the ultrasound). My experience was that my blood tests did not show inflammatory markers for rheumatoid so it took a while to be diagnosed and started on effective treatment. I had to push to find out it was seronegative in my case. I was diagnosed through having an MRI on my hands (ordered by the rheumatologist). Good luck with it all.
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