my ANA results

Hello minimii
An ANA of 1:320 is quite high enough to support a lupus diagnosis assuming there are other signs and symptoms of lupus, and to merit further testing for more specific antibodies. That's because an ANA at that titre is rarely found in the healthy population and although ANA is not specific to lupus, lower titres would be expected if it was due to other conditions.
I say 'lupus' but I mean autoimmune connective tissue diseases like lupus and lupus variants. It is listed as a classification criterion for lupus and in practice is also a diagnostic criterion as so few people have lupus without having a significantly high ANA.
You should make a list of all your current health problems, your complete health history and a note of the chronic health problems of close blood relatives, not leaving anything out of either just because you don't think it is relevant.
Good Luck with your rheumy appointment - let us know how it goes please !


Clare

Just wanted to wish you luck with your rheumy appointment also. Do post back when you have been.

Hugs Sheila x

that's interesting about the different titers and other factors causing positives. i need to find out what my titer was. i'm having trouble accessing my records.

back from doc

I´ve been to doctor today. He told me that some people might have ANA 1:320 even they are completely healthy. Anyway he wanted to take more tests, before making any diagnosis.

I always feel so depressed after meeting the doctor. He keeps telling me that because I don't have swollen joints and my crp and hemoglobin are normal it´s unlikely to have any rheumatic illness. But unfortunately I don't imagine these pains :-( And even my joints are not swollen they hurt all the time more or less. Sometimes even so much that walking or doing things is difficult. Ocassionally my joints also hurt when I touch them, like there would be a big bruise without dark color. I know that something is wrong. Maybe I just wait until my health collapses completely and perhaps then I get some help :-( Now I can only wait the results of those new bloodtests.

My ana was 1:320 also. I think if you're having enough symptoms to even lead the doctor to do the ana test to begin with, that should be enough to make them think that something is wrong. I was lucky that I got a good reumatologist who believed me and dx'ed me and put me on meds right away..I feel so much better, not perfect, but I have come a long way since I stated treatment. Good luck to you and don't give up...find someone who will take your symptoms serious.
Mary

I am guessing this is your GP telling you he doesn't think it could be autoimmune due to a few specific things (like non-swelling joints)? With lupus it is fairly common actually to *not* have visibly swollen joints, and many of us here also have textbook normal to low sed rates or CRP levels.

I'm sure you were hoping for a diagnosis and some treatment but your doctor is taking the right course even if he is wrong in a few of his statements. He is testing for additional autoantibodies and probably trying to exclude other disorders as well. It does take a while to get a diagnosis, and you may want to seek out a referral to a rheumy soon if nothing else is very forthcoming from your GP after the next visit.

You are making progress towards some answers and treatments... just keep remembering that. It shouldn't take much longer, and don't be afraid to ask for a referral to a specialist after your next appointment if you aren't much further along.

Thank you so much for your answers I feel a little better already.
Maia, yes it is my GP who told me those things. I haven't been at rheumy yet.

Today I got to know something interesting...
My GP took also borreliosis (Lyme Disease) test. That test had 4 different "parts". Tree of them were negative and one result was positive!
Doctor told me that because only one result was high it cannot be borreliosis, but some other illness might raise it.

Does anyne know, that if I have sle, is it possible that it would affect borreliosis test as well?

Some people with lupus will test positive on certain bands of the Western Blot test for Lyme disease - but usually not very many & not high enough for a diagnosis. Some viral infections can also cause positive results on some Lyme bands on the Western Blot test. I'm not quite sure from what you describe of your testing for Lyme which test you had done - so I'm having a hard time advising you. If you live in a Lyme endemic area then you may want to ask for additional testing for Lyme to be sure you can rule that out.

It is definitely important to rule that out before diagnosing something like lupus... as the treatment for the two disorders are very different.

Did your other tests come back as normal then? Is your rheumy going to send you on to a rheumatologist? I hope so!

No, I haven't got any new test results yet. This Lyme Disease-test was taken earlier, but i forgot to tell about it. At least things are going forward and hopefully I am closer to get some help. But next week I will know more.

Hello minimii
I suggest you get copies of blood test results so you know exactly what tests have been done.
I want to repeat what Maia said : autoimmune connective tissue disease can't be ruled out for the reasons your GP gave and also very few healthy people have an ANA of 1: 320 maybe about 3% and they might be relatives of people who do have an AI CTD, but you are not a healthy person !

You should be referred to rheumatology in my opinion. It usually takes a couple of months to get an appointment with a specialist. Who was it who first thought of lupus or similar as a possibility ?

Cheers
Clare

Hi
My gp also said similar things to me. Had to go quite a few times . then saw a locum who used to do abit of rheumy work and he was only one who listened to me and got the ball rolling. still gonna take a while though only started having tests in september. Good luck with what your going through. I am also feeling frustrated with one dr saying one thing and another saying different, hope you get def answer soon so you can be relieved of your pain.

Hello there,

Just quickly seconding what the others have said. It is very typical for people with lupus to have very painful but not visibly swollen joints. Personally I suffer from a lot of inflammation which I can "feel" but which is not visible.

One of lupus's particularities is that, unlike RA, it can cause severe joint pain but not actually "damage" the joints (so nothing comes up on X-rays etc.).

I am also an ANA negative lupus sufferer and an ANA of 1:320 is definitely high enough for investigation by a specialist. Very very few GPs and even many rheumies know little or nothing about connective tissue diseases. You need to see someone who does truly specialise.

Katharine

I agree with you all, that I should see a specialist. But it´s very hard to get meeting with rheumy here. (using public healthcare). GP´s are trying to solve everything. I could go to private hospital, but that would cost a lot. But if I don't get any answers next week, I am ready to pay to get help.

Beyond everything else, I got a some sort of a strange flu again.
Only couple months ago I had tonsillitis (angina) and high fever.
And now my (lymph nodes?) on the neck are once again swollen and hurt a lot. Last time after angina they were couple of weeks so painful I could´t move my head. Everytime I got this "flu", joints and muscles ache more than usual and I get cramps. Last night I woke up because I had the most terrible cramp in my calf. I feel pretty sick right now, so I´ll go to lay down now. I will call my lab results tomorrow and I´ll let you know.

Hi there

Im sorry that your GP is less than supportive and certainly less than knowledgeable about autoimmune problems. I presume you told him about the flu-like symptoms, the swollen lymph nodes and the painful joints and muscles?

Do you have the kind of relationship with your GP that you can ask him out straight for a rheumatology referral based on your symptoms and ANA result? I do think that sometimes doctors are reluctant to outright refuse a referral for a patient, especially if they know that the patient will go privately themselves anyway. Just a thought.

If he wont refer you, then I definitely think paying private for a thorough rheumatology investigation will be worth the money. I hope you can afford it.

Best of luck and keep us updated

Take good care
Joan:rose:

Hi,
Just one more question: I found out that 2005 I was also taken ANA test, because I had red rash on my cheeks. Then the result was

It varies mimi even in people who are diagnosed and even over a short period of time. A few weeks after that test, it might have been 1:320.

Hang in there - its the symptoms that count most and 1:320 is certainly high enough for further specialised tests. In the ACR criteria list it says that criteria need not be all present at the same time, just observed at any point in time.

All the best
Clare