ana bloods

[anbuma]

I seem to remember someone saying ANA is blood test fro lupus?is that so?if it is then I have lupus.in my rheumy sletter from 2012 to my gp it clearly states that ANA blood test is negative

[Lucy74]

I think it's if the ANA is positive, then you may have lupus. Because it means that the antiobodies are there. But the ANA test is not completely indicative of Lupus, as far as I know.

[Cann in reply to Lucy74]

My doctor said that a large proportion of the population come out as positive with ANA tests not just lupus.

[helen0701]

A negative test means you dont have antibodies present so you dont have lupus.

[anbuma]

get confused between negative and positive when it comes to bloods.that letter was from 2012 .defintiely have lupus symptoms now -ones that are not fibro.this letter was from my rheumy to my gp and states things which aren't his department /nor his concern /what I DID NOT tell him and what should have been -gave me no chance to tell .still battlign with gp to get diagnosed.a struggling to do housework and walk dogs-cos mostly of pelvic pain.

[helen0701]

What he reported on was what he examinined and what he saw and result s of blood tests which seems reasonable to me dont think it is useful to just rake over the past, you had the opportunity of a mediator through the gp to help things ove forward but you refused that. Moving forward is about getting a diagnosis for what you have got and this is often done by eliminating things first. I know you believe you have o.c lupus and thyroid problems but unfortunately they cannot just take your word for it. Without the mediator it is going to be difficult to move forward. I hope you get it sorted out

[anbuma in reply to helen0701]

the only response I ever get is "I cant feel anything"but he cant feel my pain etc therefore should accept what I tell him when it comes to pain etc.what about visible symptoms-when these are dismissed?

[helen0701 in reply to anbuma]

A patients signs and symptoms they report are just part of the picture when getting a diagnosis I feel your raking over old ground and you need to move forward. No medical professional is goung to agree that you have OC lupus or thyroid just because you say you have the signs and symptoms. If they do further tests which discount them it is a case of trying to find out what is causing the problem and they dont always find out. Try working with a mediator to enable you to move forward with your healthcare,

[Hidden]

Its said that Anti Nuclear Antibodies (ANA) are positive in approx 95% of Lupus (SLE) patients so you are unlikely to have it if you dont have the antibodies, however, there are still 5% who are negative but do have more than 4 of the 11 diagnostic criteria for lupus so are diagnosed with lupus regardless. Hopefully your doc will have gone thru the criteria if she said she feels you do not have it.

ANA's are 'general' antibody test because they are positive in many different auto-immune disorders. If it does come back positive they usually do more specific antibody tests to confirm which of the AI disorders the patient may have.

I gather the pelvic pain isnt related to the gynae problems and you had the result of the CA-125 looked at? Sorry you are having these problems and hope you find some answers soon.

[anbuma in reply to Hidden]

i dont know what else pelvic pain can be associated with,tho I have had a polyp removed btu don't think its that.i ahd an op to prevent stress incontinence where they insert a mesh support -could be that btu taht doesn't explain stomach swelling which got worse after gallbladder op.told gp this btu that fell on deaf ears too.can feel pressure on my stomach right now.

[Hidden in reply to anbuma]

There are lots of things that can cause pelvic pain including post surgical adhesions which I know first-hand can cause bloating and severe pain (particularly if its two or more organs that are stuck together and pulling). They dont always recommend going back in to divide them but it did the trick for me... it could well be that it isnt this but its just something to consider that they forget about mainly because its not really able to be confirmed until they do go back in or are able to see them on an MRI.

I found a few links for you on the criteria for lupus... if you have 4 of the 11 then I would be pushing the doctor for a more complete look at your health.

lupusresearchinstitute.org/...

ncbi.nlm.nih.gov/pubmedheal...

[tracynoe in reply to anbuma]

Think you need to read this independent.co.uk/life-styl...

[Purpletop]

That was 2 years ago but it seems that at the time you had fibro (he mentioned pain in all 18 tender points used to diagnose fibro), tummy was tender but there was nothing detectable by touch and you had slightly elevated markers for ovarian cancer which he believed there weren't a concern otherwise the hospital who did the tests would have alerted you to it.

2 years is a long time in autoimmune diseases, so it would be worth re-checking the bloods. If you've had them and ANA is still negative, then it is highly unlikely that you have something autoimmune. I would repeat the cancer marker test, just to be sure that it has now gone back to normal.

[anbuma in reply to Purpletop]

=even if iasked him to he would probably refuse.stomach(gynae problem?and oc not his dept)lupus apparently begins with raynauds and can remain dormant for many years before striking.so maybe fibro diagnosis in 2005 was start of lupus -of which symtpoms struck with vengeance in 2011(tho didnt know this at that time-only read that this year)stomach is not only now sore btu rock hard and so swollen .

[Hidden]

In his letter he says it is a repeat ANA test, which means you must have had one before that was negative as well, so it does sound like they are checking for the things that you are concerned about. He has mentioned your CA125 because it's clearly a concern to you, and is mentioning that gynaecology should be monitoring it (which we know they have since, and the levels have dropped I think you posted 14 and 15 with the hospital, plus an ultrasound scan). At the start of the letter he is talking about your skin and his observations, which is part of a Rheumatologists remit when checking for lupus. The letter is really not as bad as I think you have interpreted it to be although only you can say what happened in the appointment itself. If it's any comfort, every appointment I have with my rheumy, they go on at me about my weight too, as being lighter eases the load on the joints, so I suppose that is why they may refer to weight? As Purpletop says, you should probably ask for a repeat ANA just because of the time since the last one. Good luck x

[anbuma in reply to Hidden]

hi jigsawcat.his letter may state about skin and ca125 but none of these were mentioned or discussed by either him or me at the appointment -just put in his letter.,he didn't give me any opportunity to tell him of my symptoms-which is my argument all along.what no one is getting is that the weight gain is not general or anything to do with diet and is all abdominal -suggesting a mass or something.i would be a normal size 12/14 if it werent for my belly,i have told my gp what happened at teh appointment (that I told rheumy I was never hungry always felt full had pressure on stomach which prevented me eating much and hadn't eaten cakes puddings biscuits snacks etc and only a small meal fro 4-5 years at that time)-still the same now.they cant accept this.

[Hidden in reply to anbuma]

But you went to see him about Lupus not your stomach, and the tests he did were for Lupus, skin, nails and bloods are all his remit. I admit I might be getting confused about what it is that you are upset about with the Rheumy. What would you have told him differently about your lupus symptoms? Presumably, skin, nails, abdomen, bloods, joint pain, were all checked based on your GPs letter of referral as being symptoms you had complained of that led to the referral in the first place? As I say, I'm getting really confused about what it is you want to happen next, but I hope it works out for you x

[anbuma in reply to Hidden]

I was referred to rheumy as it had been 7 years and symptoms worsened- not specifically for lupus (I hadnt heard of it then).EXACTLY!!(1) I didnt go to see him re my stomach and it was him that brought up the subject of weight not me -I just put him in the picture that the weight gain was not a diet problem as he was implying.(2)he DID NOT carry out any tests on that day. thats cos he concerned himself with stuff that is not his concern and what should have been he failed to let me tell him (how things had been in 7 years)by interrupting me .all I got to say was "things were stable up until 2011 and then hit with vengeance".(3)if he had given me the chance I would have told him of scalp condition(raised sores that bled),facial rash ,nasal sores and bleeds,facial swelling etc.at that time I didn't have half the symptoms I have now.

as i ahve had skin rashes etc for so long and as A&E said need to see a dermatologist.then i should see one.seems you are getting slightly opinionated again

[Hidden in reply to anbuma]

I'm sorry you feel that way, I find your posts confusing that's all, I was simply trying to understand. Good luck with it all

[anbuma in reply to Hidden]

cant explain it any simpler.too many people (family included)dont listen to me.it smy body and im the one that wa sthere so know what was said.they can write what tehy think in letters doesnt make it the truth

[Hidden]

Hi there. The ANA test has been covered well by people above but I'd like to give my spin on it. Nearly everyone who has SLE has a positive ANA result (Anti Nuclear Antibodies - which makes us sound like protesters). Something like 5% of people who have SLE don't have a positive ANA result, so it is possible to have SLE but not have a positive result to this test. ANA can also be positive for a whole range of other conditions and even ordinary everyday infections so even if someone has a positive result it is not conclusive that they have SLE. A positive result is an indicator that SLE may well be present but it is not conclusive. A negative result would tend to indicate that SLE is not, in the majority of cases, present but it doesn't rule it out completely.

Hope that helps.

Good Luck.

Steve

[anbuma in reply to Hidden]

thanks

[Shadows-walker]

Hi I had a positive for lupus and I don't have it I have undifferentiated conective tissue desease , sjorgrens , raynaulds , fibro ,psysoris , and Gilbert's syndrome . The drugs I am being treated with are the same as lupus my GP thinks I have lupus the rhummie says not ,I have got to the point I don't care what it is as long as I am looked after, I now have Bowel issues and I have difficulties with to much sun which is very frustrating I hope you get the help you need I did find when I got upset with rhummie he digs his heels in, doctors don't like being told there wrong if you go private it cost about £200 for a consultation I have been told again I wish you luck try not to get stressed x

[onamission]

I also think some of us live in areas with very god Rheumy Dr's I also have many symptoms of Lupus painful joints balance problems constantly tired and when I go out in the sun I get purple marks and feel really ill.

I was sent to see a Rheumy and he took bloods asked me about my symptoms saw my purple marks the bloods came back ok he was totally baffled then he realised I had COPD he asked me if I took steroids when I said yes he said this is what is causing my symptoms before I could say the symptoms started before I took steroids he had discharged me. I also know other people who see this Rheumy and they all say he is a waste of space, I still have the same symptoms but unless I save and go private I'm not going to get a answer so I have to wait till I can go private but I wont go to him.

[anbuma]

at least yours asked you about your symptoms and let you tell him.

[yorkshiregirl44]

I think what you are saying is that you have been treated very badly my medics and you know that something is not right. GPs and specialists get paid to find out what is wrong with you. Maybe it is alot easier when youpresent with symptoms and a blood test can back the symtoms up. Alot od specialists dont look further thatn their nose and so you become a problem to them.

Many years ago i had 33 emergenct GPs visit me at home, i was in agony, sick all day, could not get out of bed. Not oe of them found anything wrong with me or sent me to hopital. Then the light bulb moment happened when a specialist came to see me..bingo he had me staright in hospital, i was given 3 months to live if i didnt have surgery. I had a perferated bowel, a blockage, a tumour, septecemia..all this due to crohns disease. So dont give up there will be one doctor or specialist whos left hand will know what his right hand is doing.

Dont give up the fight and never apologise for your persistance..its your right and their duty to find out whats wrong.

[anbuma in reply to yorkshiregirl44]

I am really concerned because of my persistent pelvic pain from time I get up ,as well as CA125 tests being raised above the 35 tho not excessive and swollen stomach no one will give me a definite diagnosis for.so as far as im concerned(and my dogs concern) it can only be one thing.i have looked back thru my diaries ive kept of when symptoms began and I first reported pelvic pain over a year ago and just cos scans say normal nothing more is considered.thinking phone dr tomorrow and demand action

[yorkshiregirl44 in reply to anbuma]

Can i ask you if they gave you any diagnosis?

[anbuma in reply to yorkshiregirl44]

no other than assuming its IBS -but never had symptoms of it.bloating with ibs comes and goes .my stomach is swollen all the time and never goes down +increasing and gettign harder.i also have had a poor appetite for years ,feeling full quickly and never hungry.more recently (at least the last year)feeling of pressure on stomach when I eat (breakfast)and often choke on it.have had cough for two years which dr wont recognize cos says chest is ok

[anbuma in reply to yorkshiregirl44]

years ago my Raynauds and fibro were diagnosed based on symptoms.in lst 2 years have had scans xrays and bloods and they all say normal?after I saw ENT consultant -having nose bleeds and nasal sores for 9 months -all he said was "its not sinuses"whch didnt tell me what it was.sinuses get blocked btu don't cause bleeding as far as I (me or gp) had ever mentioned it was a sinus problem.everyhtign I say now falls on deaf ears.,i just hope its nothign serious btu my body says otherwise and I am so concerned i wont be here for my dogs

[onamission]

Hi yorkshiregirl44 you really did go through the mill crohns disease must be the worst of all I would sooner suffer with COPD and consider myself lucky having COPD. I have just found this sun sensitive purple marks loss of balance and constantly tired very frustrating and what ever the problem is just wish the light bulb would come on. I'm not one for sitting around falling asleep at the drop of a hat and then the butterfly rash on my face I have now grown a fringe so you can't see it on my forehead I'm fed up of people asking why I have a red face.

[yorkshiregirl44 in reply to onamission]

When we are unwell..we are unwell whatever the cause...and it makes it worse when we are not listened to., you have a right to feel frustrated.

Is your condition treated by a rheumy? iv heard of it but have little knowledge.

On a plus side..iv been very lucky after my op for crohns 30 years ago...but i have 2 sisters with it and my mum died of it...horrible disease which left me fearful and sceptic of medics.

[onamission in reply to yorkshiregirl44]

COPD is not nice by any means and we have no cure we just have to be carful not to get the flu and it will get me in the end but I would rather COPD than what you have. My GP takes care of my COPD I have steroids and antibiotics at home all the time in case of a chest infection and I move much slower these days.

[Hidden in reply to yorkshiregirl44]

I'm so sorry for what you've been through, it's inexcusable to be left in that state for so long. But, thank goodness you are here to tell the tale and offer others support and such empathy x