I understand that there are many parts to making a diagnosis of Lupus or other auto-immune disorders. My ANA titer in December was very weak at 1:40 with speckled pattern to now being 1:320. I also have had joint pain, rash on upper torso and fatigue for 17 months. I saw a new rheumatologist recently who dismissed the ANA titer of 1:320 as insignificant and said since the rash wasn't the typical rash on the face, he had no explanation. He said since the other "Lupus specific tests were negative" that I "probably have fibromyalgia" and dismissed me with no f/up.
Meanwhile, I still feel horrible. I have no idea what to do now. Is the ANA titer at 1:320 insignificant in this situation? Should I just accept a diagnosis of fibromylgia in light of the rashes that go along with the joint pain and fatigue?
Thanks for any replies.
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Wallis86
04-20-2008, 11:09 PM
Have they tested you for any other autoimmune conditions? Some healthy people have raised ANAs but I wouldn't dismiss such a high ANA. As you probably know, normal is less than 1:40. Lots of autoimmune conditions can raise your ANA, and often specific patterns are limited to certain kinds of conditions. I'm fairly certain it is not common to have lupus with a speckled pattern. What other "lupus tests" were run by your doctor? Have you been diagnosed with any other illnesses, even infections? My general feeling on fibromyalgia, which I've been diagnosed with since I was 11 (10 years ago), is that it is a symptom, not a diagnosis. Fibro essentially means "body pain", which doesn't help explain why you are experiencing those symptoms. I'm currently in a similar situation, awaiting some more diagnostics. I have a whole slew of autoimmune conditions, but for the first time in 10 years I have a positive ANA of 1:80 homogenous, neurological issues (spasticity in my legs, clonus, hyperreflexia), joint pain (I have enteropathic arthritis, but I'm on tons of biologic meds), muscle pain, heart fluttering... I'm waiting on the lupus specific tests and MRI results. Hope you figure things out.
lynn41
04-21-2008, 12:04 PM
All I got was a letter from the rheumy indicating the following:
ANA test again positive at 1:320
Double stranded DNA for lupus - negative
Rheumatoid - negative
CBC - normal
ESR / CRP: normal
SM, RNP, SSA and SSB - negative
CCP negative.
It just seems odd to me that the he would consider the ANA jump to 1:320 as insignificant. Then again - I'm new to all this and I have read the articles about false positives and the fact that the ANA by itself is not significant in making a diagnosis. It's not just the ANA though - it's the pain, fatigue, rashes, etc. that are wearing me out! :(
Thanks for your reply!
Kimmioh
04-25-2008, 01:25 AM
All I got was a letter from the rheumy indicating the following:
ANA test again positive at 1:320
Double stranded DNA for lupus - negative
Rheumatoid - negative
CBC - normal
ESR / CRP: normal
SM, RNP, SSA and SSB - negative
CCP negative.
It just seems odd to me that the he would consider the ANA jump to 1:320 as insignificant. Then again - I'm new to all this and I have read the articles about false positives and the fact that the ANA by itself is not significant in making a diagnosis. It's not just the ANA though - it's the pain, fatigue, rashes, etc. that are wearing me out! :(
Thanks for your reply!
Mine was positive aith the resulrt of 1:2560, and a positive Rf at 600, Pstv anti ro and anti la, ngtv everything else. My Hair and lashes are falling out everywhere allready, and it's only been two months. What is to be done to pre THanks. A concerned frient.vent hair loss?
tinker1948
04-26-2008, 06:53 PM
I would not dismiss it as just fibromyalgia. I have fibromyalgia for nearly 25 years now.I was diagnosed with lupus 12 years ago but now new rhuemy not sure. Says speckled pattern leaning to wards scleredoma and or UDCTD. I also have RA and raynauds but feel left in a lurch as to what I really have.I am on plaquinal.
mmee
05-14-2008, 10:31 PM
lynn41,
I also have a positive ANA at 1:640. It is at 1:640 for both homogenius and speckled. I had the additional testing and nothing showed up, so I know what you mean. I also was diagnosed with myofascial pain syndrome, so I was told that that could relate to the high ANA and it also could not, so I don't know what to think either. I also have Raynauds too and hypoadrenalism.
This has been going on for me for about 15 months now, and just 2 months ago my calcium started to show up intermittently high, so I am not sure what is going on with me.
I hope that you can find answers. It is so frustrating not knowing what is really wrong, I know.
I have the heart symptoms (rapid heart rate), and they are what bother me the most.
Let us know how you are doing.
mmee
Kimmioh
05-14-2008, 11:18 PM
My ANA is at 1:2560 Speckeled and 1:640 Nucleolar. Do you or anyone out there nknow the significance to these numbers?
mmee
05-15-2008, 10:30 AM
Kimmioh,
I am really not sure what diseases go with speckled and the nuclear. Mine are both high too, and I know that I tested negative for all of the individual diseases, but my ANA is high too.
Have you had any other tests to go with the ANA? What are you symptoms?
mmee
PraisinGod
07-07-2008, 02:02 AM
Hang in there kid. The average on getting a diagnosis for Lupus is about 4 years and about that many doctors. Meanwhile, I suggest you do your own research on how to win this battle with supplements. I am in the same boat, but I'm not sitting back while they wait for something magical to happen. My Rhematologist at least told me she thougt I had Fibromyalgia and discovered I also had a vit. D deficiency.
I have an ANA of 1:640
Raynaud's
joint pain (knees, ankles, wrist and fingers)
muscle pain and weakness
headaches
dizzy spells
chest pain
tachycardia
hydronephrosis
etc......
I know how frustrating it is to have alot going on in your body and not get any answers from you dr. Just know that certain things have to happen for them to give a diagnosis. you must have 4 out of the 11 critiria in order for them to diagnose you with lupus, because other things can cause the ANA to be elevated. (In my oppinion, joint pain aren't symptoms of those)
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07-07-2008, 08:15 AM
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mmee
07-08-2008, 10:21 PM
PraisinGod,
Hi, My ANA titer is also 1:640. We have alot of the same symptoms too. I was diagnosed with myofascial pain and then recently with fibromylasis also. Do you think that that is where your high ANA is coming from is the fibro, I don't know what to think, because nothing else was found. I also have a vitamin d deficiency.
Just wondering about your thoughts on that.
Thanks,
mmee