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Another Newbie!!

493 Views 9 Replies 6 Participants Last post by  LolaLola
Hello all!!
My name is Lisa. I am a SAHM to 2 wonderful sons. Lane who will be 11 on Sept 15th and Lance who is 9. I have a wonderful supporting Dh named Darrel to whom I have been married to for 12 years. I have been newly diagnosed as in just a few moments ago. I got a card in the mail saying my FANA was "mildly posisitive". So being confused I called my DR and she said that it meant that I had it but that we just caught it early. That I was lucky enough not to have to go years without a diagnosis. If you call that lucky :wink2: So here I am waiting on the rheumy to call with an appt. I am so glad I stumbled across this site because I am so confused with all this "mildly positive" stuff. I am really in need of some support. I thank you all for taking the time to read this! And I look forward to getting to know you all!:)
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Hi Limarie,

Welcome to the site. I hope you find it as beneficial to you as I do.

I just have a couple of questions. You said you are a SAHM to 2 wonderful sons. I'm sorry but I don't know what SAHM means,, could you explain? And could you explain what FANA means. And what it is the doctors think you have.
It is lucky you were diagnosed early no matter what it is. NOw they can take care of you and your illness better.

I wish you well and hope to chat with you soon.

Take care,
Hi and thanks for the welcome! Sorry for the confusion! SAHM is code for stay at home mom!! And the FANA is a Fluorescent Antinuclear Antibody test. My DR says that I have some form of Lupus. I assume SLE. And that she is referring me to the rheumy (she says that the rheumy will be able to give me more clear answers) so I am waiting on her to call me. I am not too happy about that but what can I do :mad: I am going to ask the rheumy to repeat the FANA because I was on a megadose pack(for my bursitis) when the first test was done. So that may be why the results cam back mildly positive????? :?
Hi Limarie,

Welcome to the forum!

How are you? What symptoms were you having to lead your GP to run the ANA test?

I am slightly concerned that the doctor may have mislead you. Having a positive ANA does not mean with certainty that you have lupus. In fact most people with a positive ANA do not have lupus, especially those with a low positive result.
Also how high the titre is does not correlate to how long you've been sick, or how sick you are. Generally a very high titre (1:1250 or higher) is pretty conclusive that there is a real connective tissue disease present, but even then the person may be mildly affected, or someone with a low titre can still be very ill. The ANA titre someone has can change with time, and again this does not correlate usually with diseas activity.

A positive ANA plus symptoms which suggest lupus or a rheumatic condition are very good reasons to refer someone to a rheumatologist, so it is appropriate that you are getting to see one soon.

Read throught the information on the homepage of this site and you'll learn a lot about symptoms and diagnosis of lupus.

Make a note of all symptoms you have now and also have had in the past.
The rheumatologist will also do a lot more blood tests and examine you. It is very unusual to come away from a first appointment with a rheumatologist with a diagnosis. They will almost certainly not say anything definite straight away, but will wait for blood test results and probably also wait to see how your symptoms progress with time.

You make a good point about the mega pack (of prednisolone I presume?).Steroids can "mask" blood results resulting in a lower or negative result than other times. How long will have passed since stopping the pred and having the repeat ANA? Make sure you tell the rhumatologist you have recieved prednisolone in the recent past so he/she can take this into account.

What are your concerns about seeing a rheumatologist? They are the ones specialised in diagnosing and treating SLE. If you do indeed have it you will be having a long term relationship with your rheumatologist and it is worth making sure you have a good one.

Looking forward to learning more about you. I hope you like it here.

May I also direct you to read the forum guidelines?

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Hi Cath!
Thanks for the welcome! I was pretty shocked to get the "mildly positive" results back. I was totally not expecting it. I actually went in for the joint pain and rash and found out I had a very high strepolysion O titer the 2nd time in 2 yrs. I wonder if this is why I keep getting the Stretolysin infections??????? As far as my symptoms go I am having severe joint pain, my hair is falling out by the hand fulls but only when I wash it, I broke out in a rash, I have old seizures that started back in 2005 out of the blue. I haven't had one in 1 1/2 yrs (knock on wood) I am a bit confused tho as to how the test turned into a FANA. I thought I had a ANA/DNA done and sent off out of town to Columbia Mo. But I get the results today and they say FANA. My DR (when I say my DR I actually mean her nurse) is not all that helpful. I know they are busy but this is my life!! I have a right to know what is going on don't I?? I am sorry but I am just not a happy camper today! :mad: But I do thank you all for the welcome and taking the time to post!!
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FANA is just "longhand" for ANA ;)

You do have some symptoms in common with lupus, and even a lower positive ANA can be significant when looked at in conjunction with symptoms. But Cath is right - about 95% of people with a positive ANA will not end up having lupus - especially if the titre is low. A low positive ANA can be found in up to 25-30% of the healthy population too due to recent infection or for some unknown reason.

Hopefully you can get into the rheumy soon and get started figuring out what is wrong and how to make it better.
Thanks Maia! I really can't wait to get to the rheumy and get it over with. I just really want to know once and for all. I have only known for one day and already I have a major headache!!! :worried: My Mom has SLE and I will see the same rheumy as she does. We live in a very small town of 340 people and drive to a bigger city to see DRs and this rheumy is the only one for miles. Anyway, accoding to this rheumy having a ANA/DNA done is more accurate than just having a ANA done. Not saying that a ANA is not accurate but that a ANA/DNA is just more likely not to come back with a false positive. I guess I will find out when I have the repeat test done. Nothing I can do till then. Right?!?!?!?!?
Hi Linmarie and welcome to a great place.

I am newly dx with Lupus so I am learning a lot myself these days.

I know personally that blood test results can change from visit to visit.

I have had positive ANA's and then normal ANA's, guess it depends on if your flaring or not and that I am guessing I said I am learning about Lupus too.

I think knowledge is power, the more we know the better off we are.

I wish you luck with your upcoming Rheumy appointment. Keep us posted and let us know how you get along.

Again welcome. You have found a great place for support and information.

The people on this forum are just awesome!!!:wink2:
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ANA and DNA are two seperate tests. Whilst the ANA is positive in almost everyone with lupus, it is in no way specific (ie it can mean a lot of other things or nothing at all).

The anti DNA antibodies are very specific to lupus, and if strongly positive are a extremely important diagnostic marker. But they are positive in less that 50% of people with lupus, so there absence in no way excludes a lupud diagnosis.

It is definately worth having both these tests done, and a lot of others too, but it can probably wait for the rheumy - unless he has requested that the blood work be done before your first appointment (which would be unusual).

That your Mum has SLE is significant. Family members do have an inincreased risk of having the disease themselves. However family members of someone with SLE also have a higher rate of "ïnnoscent" ANAs too - ie a positive ANA but no symptoms. Still, you do have symptoms, so there is a definite need to get this all investigated.

All the best. How long til your appointment?

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Hello Limarie, Welcome here.
Whatever is going on you are clearly not well at present. My Daughter and I both have Lupus. Have a good think about writing a Symptom list. Does your Mom keep well?
x Lola
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