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Discussion Starter · #1 ·
hi i have a possiative ANA and along with all the other symptoms but when i saw the rheuntiologist last week she said that ANA was not even the right test for lupus i told her what i have learned from here but she would not take it on board
any advice
 

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Hi Alex,

That sounds very odd. It may not be specific to lupus alone but it is definitely a very important test which would then be followed up with further tests more specific to lupus alone.

It is a screening test for many auto-immune disorders and a high level ana is very indicative (along with other symptoms) of lupus.

Has this rheumatologist done anything about your symptoms? Given any suggestions?

Is this someone you have seen before?

sorry, I find it most odd and I am, for once :hehe: at a loss for words!
Katharine
 

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Discussion Starter · #3 ·
i also found it odd
thanks for getting back to me
i saw her for the first time last week she did 12 more bloods and now having a C.T scan next week of spleen as it was inlarged 2 years ago
i said to her if it is not lupus what is it she said she did not know and that if these test where not conclusive she would get me some physio for my pain in neck
my symptoms ares tiff and swollen neck
sore throat all the time
swollen glands
chest pain
weight loss
exhaustion like never before
pain in my arms
like nerve pain
pins and needles in hands feet and toung
headache
nausea and sickness
chest pain and very fast heart rate

the list goes on
all that with a possitive
ANA i was sure she was going to suggest something but no
any advice to what to do next
 

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Hi Alex and welcome :welcome:

ANA is usually the first screening test and then they go on to do others which it sounds like she is doing. I suspect she means that if your Anti-DsDNA test came back positive she would call it Lupus. That test is VERY specific to Lupus but not everyone with Lupus has a positive on it and a good Rheumatologist won't dismiss a diagnosis of Lupus on the basis of a negative Anti-DsDNA.

Do you know how positive your ANA was, what the numbers were? That would also be helpful, generally the higher the number during diagnosis makes it more likely you are suffering from some kind of autoimmune process.

Keep us updated, we will try and help all we can.

love
Lily
 

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Hi Alex, a warm welcome to you. I didn't want to let Katherine be the only one that was at a loss for words, so here I am>>>also at a loss for words. I would have this next appt with this dr. and if you still feel uneasy, I would Deffinately go to see another Rheumy, cuz this whole thing just doesn't sound right. Please keep us up to date.
 

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Hello Alex
I suspect there is a slight misunderstanding, I sure hope so anyway ! As you know, "getting another opinion" as our US friends kindly often advise, is so hard in the UK/ Northern Ireland, it's virtually impossible.

She is right in that a positive ANA alone may not mean lupus although the vast majority of people with lupus do have a positive ANA. Many get diagnosed with ANA as the only abnormal blood work.

She is quite correctly doing further testing to get a better idea what is going on and maybe absolute confirmation. Many doctors are very guarded and like to have a good think about a case before committing to what is after all a serious diagnosis not to be given lightly. It might be that you don't have lupus exactly but another very similar condition or a variant of lupus

The further test results can also indicate what treatment you need and if there are other conditions along with the lupus.

I hope you don't have to wait too long and suppose you have a follow up appointment already booked.

Make sure urine has been tested.
This sounds like a good start to me - let us know how you get on.
Cheers
Clare
 

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Discussion Starter · #9 ·
hi thanks everyone for getting back to me
and the support from u all
first test for ANA came back as speckled
the next one is 80 and my last one
also 80

My RA was 27

white cell count was a bit low first time around but las time it was ok
i am having my c.t scan next tuesday
and then i will have to wait for an appointment to see the dr again after that

the dr looked over all my bloods and took loads of notes she was nice to me but when she said what she said about the Ana well leaving me confused again
today on my skin on my face i have small blisters never had this before
thanks again and i will let u know what happens and i will also tell her what u guys have been saying
alex
 

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Sounds like this doc is doing some more testing on you and probably more testing for Lupus.

When do you go back?

Maybe at your next appointment you will be able to know more and try to get a copy of your blood work results too.

Good luck at your appointments.
 

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Hi alex, me again :)

Yes, it does seem there is some confusion here. If there are further tests etc being done and the rheumy is taking you seriously that is all very good.

An ana of 1:80 is not usually considered as being positive at all as many people would have that level without being ill at all and for various reasons.

I'm not 100% sure about the rheumatoid factor test but I think it also has to be higher than that to be considered worrying.

Anyway, keep us posted on the follow up and in the meantime try not to worry too much about blood tests. They are highly complex and many docs have a job with them, never mind us :lol:

all the best,
Katharine
 

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The doctor probably meant that it is not the definitive test for Lupus, which is true.

You can have a positive ANA and not have lupus.

There are other tests that are a lot more specific for lupus, like anti-sm and anti-ds-dna.

it's all a bit of a puzzle when you are first trying to figure this out. Also, Clare is quite correct, an ANA of 1:80 is not high enough to get a rheumie excited as it can occur in people with no illness at all.

best of luck with it all

raglet
 

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Hello again Alex

I strongly advise against mentioning to the doctor what you read on line or what forum members tell you. Some doctors get very irate, usually the weaker ones who lack self confidence and who have authority issues but nearly all aren't too thrilled. It introduces a a whole new dynamic to the consultation, a challenging third party with whom the doctor is also expected to deal. We need to be on the best possible terms with our doctors!

That doesn't mean you can't ask the doctor questions or aren't entitled to be well informed. It is very important to have a dialogue with your doctor and we can't do that unless we are well informed.
Also that ANA is very low: it is not specific to lupus and could be due to any number of reasons so to diagnose lupus on that basis alone without any very weighty other signs or symptoms would be highly unusual.

Good Luck !

:)

Clare
 
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