What's in a name.....??

frogmorton

Hi Lynn

I think they are treated very very similarly aren't they?

I have sero-neg in the absence of a definitive diagnosis though the rheumatologist refers to it as RA. Negative RF for me.

Still he does keep trying bless him...every time I go he thinks of something else we could try...another blood test etc.... I am being treated with DMARDs and sure they have helped no end so am not complaining.

I know though that I also have OA and can tell the difference for sure. They are both vile and both hurt :roll:

Will be watching this thread Collywobs for sure with interest....

Love

Toni xx

stickywicket

Collywobble, you think you’re confused! I was diagnosed with Still’s disease in 1961 when, I believe you were only allowed OA, RA or Still’s Disease which, I was told, was the juvenile form of RA, differing from it in that there was more could go wrong. I read the forums with a mounting sense of bewilderment.

Apart from essential medics, I just tell people I have RA. To say I have a juvenile form of it would sound crazy at almost 65.

only49

frogmorton wrote:

Hi Lynn

I think they are treated very very similarly aren't they?

I have sero-neg in the absence of a definitive diagnosis though the rheumatologist refers to it as RA. Negative RF for me.

Still he does keep trying bless him...every time I go he thinks of something else we could try...another blood test etc.... I am being treated with DMARDs and sure they have helped no end so am not complaining.

I know though that I also have OA and can tell the difference for sure. They are both vile and both hurt :roll:

Will be watching this thread Collywobs for sure with interest....

Love

Toni xx

i agree its only a name but one thing always is the same its hurts like anything you never known before, but one thing for sure we dont like this arthur what ever he changes his name to we still reconise him as a sad miserable kind of person that no one likes, heh could we club together and buy him a one way ticket to somewhere he wont like and cant come back from.

suzygirl

Thats funny Collywobble, have been thinking about this myself and was going to post. I have been told I have antibody positive inflammatory arthritis. Depending on which rheumy I see, I either get told it is RA or lupus, or both!! However I also have tendons involved which is more in line with PA, but dont have psoriasis. I do think a lot depends on which rheumy you see. I have a negative RF factor and negative anti ccp.

I was wondering how long people have to wait from an inflammatory arthritis diagnosis to being told which they have?? I believe that all inflammatory types of arthritis are due to an overzealous immune system. I would like a more definitive diagnosis, but then I am on treatment already, so shouldnt complain!!

I shall be very interested to see others responses!!

skinnylizzie

Hi Collywobble (great name by the way!)

I also have been diagnosed with Sero-neg inflammatory arthritis, with all tests being normal including RF, apart from a couple of times a positive ANA and my complement 4 level being a bit low. I'm really confused too, but I guess as long as they put us (hopefully) on the right treatment and monitor us closely that's the main thing...and hopefully one day they will tell us which type we actually have!!
I went from being told I had just Fibro in 2008, to undifferentiated connective tissue disease, to possibly lupus, to sero-neg and more recently inflammatory arthritis.
Had an anit-ccp test but no body has bothered to tell me what that was!
It's certainly a confusing area, and I agree with Suzygirl, it definitely varies from doctor to doctor and it can depend on who you see. If you can build up a good rapport with your consultant and you trust them, stick with them (unless of course you get shifted from one brilliant consultant's list to another who hasn't got a clue lol) :roll:
The docs make it sounds like all other patients are text book cases, but I wonder how long it actually took them to get properly diagnosed.

Hope you're on a good treatment now and they can help you manage your pain!
Take care

tjt6768

Oh boy, this one is a mine field for me... I don't know what I have any more, lol...
I just know it bloody hurts... :roll:
I know for sure I have OA, had that years.. Last march rheumy doc put sero-neg as diagnosis for the wrists but had since tested for carpal tunnel, find out more on 18th hopefully when I see rheumy nurse.. Hope I get more sense from her than him to be honest. Now told inflammation in knee joints as well as chondrocalcinosis in one of them.. I'm confused.com
I know, easily done..

valval

well after years of it wear and tear then oa went to rhummy and after blood tests it inflimation arther (only know this because doc showed me letter he sent her lol) not got further than that so far lol

tjt6768

Think they like to keep us guessing Val..... Lol

skezier

Hi Lynn,

Technically.... i think they are called different names cus they tend to do slightly different things and go after certain joints... yet all can go for any joint it wants just the 'normal' is certain places and symptoms....

That's all i know

OA is easier to understand cus it doesn't have sub sections..... it just stuffs you, sods-up your joints big time and goes for any bit of you it wants... I would like them to come up with a drug that makes oa go into remission.... since its not autoimmune (though some of us with it do have a lot of autoimmune dI guess they never will and just go for replacing what can be and the rest can have a field day.....

300 different types and all are slightly different in their trashing but all hurt, all cause swelling and all take out your joints, be it by eating them or eating the fluid I guess.......

The NHS just likes labels so they call it this or that and well deep down i don't really think they know what you got My pa was diagnosed on the grounds of the joints its effected and the fact that I have had a bit of psoriasis but very little and never in need of treatment.....

Hey ask the helpline cus DD and I have asked a couple of things and they have been good at explaining it ...... and Paul might be bored....

Love and (((( ))))'s Cris who must go get the hen house done.... xx

ironic

Hi Lynn,
I have had three labels so far and I am sure they will be calling me other names as time goes on!
I have a very high RF reading but have a lot of tendon and soft tissue problems so it does get all muddled up.
The trouble is things keep evolving with Arthur. I have not come across any who have the “text book” symptoms. I certainly don’t.
Lv, Ix

Starburst

I've found the whole non-diagnosis thing really frustrating. I was initially told seronegative inflammatory arthritis. Then, ANA negative Lupus which is very rare apparently. I'm seeing a new rheumy who says seronegative inflammatory arthritis is what I have but says the type of arthritis I have is seronegative RA, so we'll call it RA. The podiatrist I saw last week thinks I should mention my nail problems because she thinks it's psoriasis and therefore it's likely I have PsA. Also, I don't have symmetrical joint problems. While both sides of my body is affected, one side is worse than the other.

I give up at this point. The treatment is pretty much similar and I'm seeing some improvement. I've never been an easy patient.

frogmorton

[I was hoping for replies from people who'd experienced first hand the confusion surrounding inflammatory arthritis, Time to rip up the textbooks maybe?

Lynn[/quote]


You got it didn't you Lynn...

no-one knows!!!!

Shall we have a bonfire?? and who has Only's collection tin - I wanna stick some cash in!

Love

Toni xx