I'm so confused!!!

frogmorton

Hi Lynn
No idea girl!!
me too - my bloods were negative or on the low side of elevated too, but the rhuemy always calls it RA and as you say the treatment is the same :roll:
Maybe someone will know....
Toni xx

skezier

Hi Lynn,

Beats me so that makes 3 of us! I am sure the treatment is the same though...... Also for the pa..... My bloods had some raised bits but the rf was just inside normal so he said I got pa and I don't understand that one either and maybe I should since I cohabitate with it xx

wibberley

It's a minefield isn't it, Lynn!

My Rheumy doesn't hold much store by blood tests and prefers the 'If I pinch you there, does it hurt' DAS tests.

Only had the ESR test (as far as I know?) and that came back as 20 which when I googled it, came back as slightly above normal, which didn't correspond with the pain my body was in at all!

It would be so nice if someone could explain all these tests to me too, as I want to know more about the state of my body and whenever I google, I'm still left with more questions than answers!

Lois x

frogmorton

collywobble wrote:

Hi Toni

Thanks - hey, maybe it depends on the rheumy (maybe ours couldn't spell sero-negative) :shock: :roll: I wish they'd make it easy for us plebs!!!!!

Lynn xxxx

He he!! Nice one Lynn
I think it sounds rather good though!!!
Aerioulsy though I do think they should diagnose on symptoms too if they are halfway decent
Toni xx

topgirl

It does get confusing :shock:
I think they call it sero-negative if the rheumatiod factor does not show up in blood...I havnt got it and my bloods are always pretty much normal....in the end they went into my knee and sent a sample of synovial fluid of to be tested and that showed i had..wait for it...... sero-negative primary imflamatory arthritis'.....
BUT my gp still says its RA!

skezier

Hi Lynn,

Reacon I can get an eviction notice on him Oh I wish...... all of em actually, I think I became a flat the amount of lodgers I got xx

Hi Kay,

You ok? Do you think it really is down to each Rumo's discretion? One thing though you just explained why they drained some fluid off for me Take care Cris

annie_mial

Hi girls - to add to the confusion (probably) what I can do is tell you how this all applied to me. I nearly went mad at the beginning, some 10 years ago, cos there was very little info anywhere on any of this stuff and I had to dig and keep digging till I found some.

Then, the blood results were not exactly taken as Gospel, but close. It seems to be only since that time that the 'sero-negative' bit has turned up as a label. For two years I was in constant chronic pain and for two years, until I found a doctor to take me seriously, I was labelled as neurotic, hysterical and probably attention seeking as well. This was because they did do the blood tests and of course they came back negative, negative every time.

It was only when I found a doctor who actually listened to what I was saying rather than dismissing me out of hand and got a referral to a Rheumy dept, that I was finally diagnosed on a 'match symptoms' basis for both the original arther condition (Polymyalgia Rheumatica) and eventually for it's linked condition of Giant Cell Arteritis. In both cases I matched 4 out of 5 symptoms. For GCA the fifth one is an arterial biopsy and I so clearly had the condition that going that far was a bit pointless.

A bit less than a year ago, I began to notice other symptoms and strange happenings which continued and worsened. As it happened I had been referred back to the Rheumy anyway at that point as I had been found to have osteoporosis, so I kept notes etc and handed them to the Rheumy. After more tests, more bloods, more of everything, she was quite open with me - I have obviously got another arther condition, but according to her I have 'bits' of everything (Lupus, RA, PA) and nothing so far is specific. And still the bloods are negative.........

As has been said, in a sense it really doesn't matter as they are all treated the same and of course, I'm now on MTX. (It's probable that another whatever will be added in next month, too).

It would just be nice to know, though..........

Sero Negative Annie

chile168

Hi Lynn,

Tests do leave you confused and unfortunately appointment times are short and limited, certainly in my case.

ANA - Autoimmune Nuclear Antibodies. I test positive ANA positive++
Cardiolipin positive - Sticky blood cells.
ESR - goes up and down
CRP - up and down
CCP - strongly positive - tipped the scale lol

Im not sure whether RA also can show ANA positive. I have shown ANA positive for years and diagnosed with Lupus 2005, I also show cardiolipin positive and that can also change. I read something and I think ANA can show positive with RA but don't quote me.

I admit that my FBC result are all over the place and my eyes popped out :shock: as I went down the list with so many normal and abnormal things showing up.

I wanted to explain a little on ANA result which basically means you produce more antibodies than normal.

Hope your result come back good. Keep us updated and good luck hun

Love x

Eve

sharmaine

Hi Lynn

Gosh.... I'm even more confused and don't know much about seo-negative arthritis. Can your specialist help? When I was diagnosed with OA it was after a blood test and XRay. My bloods also showed that I had the RA gene. I felt too silly to ask whether or not an individual could have more than one arthritis condition. From posts on the forum it seems that you can.

I'm sorry I'm not any help - but it is really interesting how they arrive at their decisions when diagnosing a person's condition.

Sharmaine

collywobble wrote:

Hi,

Lots of people here are diagnosed with sero-negative arthritis, which if I understand correctly, simply means that you have the symtoms of RA, but bloods are clear?? So, does that mean tests like CRP, ESR, anti-CCP, etc, are all negative?

The reason I ask, I wonder at times why I was diagnosed with RA, and not sero-negative arthritis. I know in the grand scheme of things it probably isn't important - the treatment is still the same, isn't it?

Apart from a very slightly elevated CRP at the beginning (12), and now it fluctuates between 3 and 5 (so normal), the only positive blood result I've had (I discovered only recently) is the anti nuclear antibodies - a high of 1:320. Short of kidnapping a rheumy, and sitting on his chest, I can't seem to get an answer on this one. Google tells me it might be an indicator of an auto-immune disorder, a connective tissue disorder, amongst other things, but all my other antibody tests (for Lupus, etc) were clear. So, has anyone else had this ANA result, whilst other results were clear? And what was your diagnosis?

Is that why I got the RA diagnosis, and not sero-negative? And am I correct in thinking that treatments are the same?

Why is it all so confusing????? :? :?

Love from Lynn xxxx

salamander

hi Lynne, I have a sero-negative diagnosis. This because I don't show the rheumatoid factor in my blood, though that can change with time, apparently. I had all sorts of raised things when I first got ill and was admitted to hospital as it was very severe. Even then they could not make a conclusive diagnosis as could have been reactive arthritis. Now they have decided it is sero-negative purely on my symptoms and the fact it is not going away. My blood tests are more or less normal now, even when my joints are very painful. This is not uncommon, it is also prob because I am on steroids and it is damping down the inflammation. It is confusing as I wonder why I am so bad when the bloods are so good. My gp says it is quite possible there is some other factor they don't yet know about that would indicate what is going on. It's a difficult one!

I also got tested for lupas as I had a disc shaped swelling on my leg but tested negative for that too.

xx

page35

Hi Lynn
Well depending on who i speak to or what letter i read i either have RA, sero neg inflam arthur or anti-ccp positive undifferentiated arthur.
the ccp test was very very high all other tests i had were pretty normal.
they also think i have serjons (i cant spell that).
i take mxt and going to go back on hydroxy as well.
what ever it is we all want it to go.

Starburst

The whole sero-negative diagnosis has was an endless source of stress and confusion for the first couple of weeks after my initial diagnosis, which was only 3 months ago. This is how it was explained to me and I'll try to repeat it in simple terms......basically, sero-negative means there is an absence of a specific antibody, in this case, it's the rheumatoid antibody. So, sero-negative arthritis can be diagnosed, even if you have other elevated blood test results i.e. ESR and CRP. However, some rheumatologists will diagnose you with sero-negative RA, whereas others will label you slightly differently. I think the important thing is getting the right treatment. My official label is sero-negative inflammatory arthritis but I'm being treated as if it's RA. I have all the symptoms and the affected joints are typical of RA.

I hope this helps.

Starburst

P.S. Sorry if I've repeated what's already been said.

topgirl

skezier wrote:

Hi Lynn,

Reacon I can get an eviction notice on him Oh I wish...... all of em actually, I think I became a flat the amount of lodgers I got xx

Hi Kay,

You ok? Do you think it really is down to each Rumo's discretion? One thing though you just explained why they drained some fluid off for me Take care Cris

Hi :!: :!:
Yes, im good since I was put on the good old steriods....( just till i see the rumy)...such a shame you cant stay on them....
Had a bit of a hellish time with my Manager when I went back to work but on the whole...not bad...hows you?....
I believe that taking the fluid is a last resort for when they are really baffled...which sounds about right fo :!: r me....lol

page35

HIYA Lynn
oh yes i have far to many questions but the anwsers are not all there and some answers are not the ones i want to here so i ask something slightly different :roll: :oops:
keep asking Lynn
All the best

Starburst

collywobble wrote:

I wonder then, if they have a database of some sort, which shows how people react to the RA meds? Do people with the rheumatoid factor react better than the sero-negative people? Or vice versa?? Does anyone else have these questions rattling round their brains? Does anyone have the answer????

Hi Lynn,

It is my understanding that rheumatologists used to believe that people with sero-negative RA has a better prognosis and that the disease was milder. However, these days, not all rheumatologists think this. One reason they might have thought this was because, quite often, people with sero-negatve RA are actually in the early stages and early treatment means less chance of joints being damanged by the inflammation.

Does this make sense?

Sophie x

P.S. Can you tell that ALL I've been doing for the last 3 months is reading information online?!

frogmorton

Sophie
Thanks for spending all that time on-line
Love
Toni x