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Old 10-27-2003, 06:18 PM   #1
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AngelaA HB User
Post ANA major increase in 3 weeks time!

Hi,

I'm still trying to make sense of things. A neuro tested for ANA came back as 1:80 borderline positive. She blew it off as unimportant and "lot of people have it". I was retested by a different dr and just got results back 1:640 in 3 weeks time. Antibodies showed up in the centromere pattern only. I am scheduled to see rheumy in 3 weeks, but I can't afford many visits to him as insurance will not pay much of bill. Only one rheumy in this dang town and rest are 300 miles away. Meanwhile I have cold hands and feet like I have had for past 10 years and is especially worse now that its getting cold outside. The fibro aches and pains have return much like I had 15 yrs ago when I went to a rheumy when I was in college who told me it was all in head because only thing came back positive was high white blood cell count, but no ANA or elevated SED rate. Does anyone know much about centromere patterns and if it can only mean PSS w/CREST? I don't even find much to read about PSS unlike Lupus.

 
Old 10-28-2003, 09:53 AM   #2
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AngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB User
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Hi Angela!

ANA's can change from day to day- from Positive to negative and so on. I am not surprised that yours has gone up so much, it is common! If you do have a Mixed connective disease (By your symptoms and blood work I am pretty sure you do) then this all makes sense. You are right that a centromere pattern can be related to PSS and CREST Syndrome, but I do think that in some situations it cane be other mixed connective tissue diseases such as Lupus. I would see if your doctor will do an Anti-dna test on you, it is the more specific test for Lupus.

Information for you and everyone: CREST Syndrome is characterized by Calcinosis (calcium deposits), usually in the fingers. Raynaud's;(the circulatory problems that you have),loss of muscle control of the Esophagus, which can cause difficulty swallowing; Sclerodactyly, a tapering deformity of the bones of the fingers; and Telangiectasia, small red spots on the skin of the fingers, face, or inside of the mouth. Does this make sense for you Angela? OH I remember now! The centromere pattern of ANA can be related to the Raynauds Phenomenon, which is also seen in Lupus! Please check the symptoms of Lupus in this forum, and I hope that this helps a bit

~Angelic

 
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Old 10-28-2003, 05:01 PM   #3
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AngelaA HB User
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Angelic,

So are you saying it is possible to have Lupus instead of PSS even with centromere pattern? Why is there so very little written about the centromere pattern? From what I have read Addison's disease and Hashimotos will occasionally show up on ANA tests. I have adrenal insufficiency and have hypothyroid, but the usual thyroid antibodies test came back normal. I am wondering if the ANA might be connected to my adrenals and/or thyroid conditions. Also I have a theory here... I have read taking selenium would lower thyroid antibodies in Hashimotos patients. When I had my first ANA test I was taking daily selenium supplements. However I discontinued it as I was feeling hyperthyroid... so after being off seleium 3 weeks my ANA just so happens to skyrocket. Hmmm... I thinking about taking the selenium again and just lowering my thyroid meds a bit (so I won't get hyper again) and see if I can lower the ANA. Or should I wait until I can see the freaken $200 a visit rheumy on Nov 14th? Since the weather has turned cold I am hurting big time, so if I can get some relieve from supplements I'd do it. But is it worth altering tests that would make drs say finally that its not all in my head? Or is it better to let them think that, and go ahead see if I can put this autoimmune thing at bay?

PS: I let my GP know today that ANA came back 1:640 and she thinks its a lab error. She thinks its impossible.

 
Old 10-28-2003, 06:45 PM   #4
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Sampy123 HB User
Question

What is a normal ANA and what is considered high? I'm a bit confused. Please clarify, thanks.

 
Old 10-28-2003, 08:49 PM   #5
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Hey again!

Sampy: A normal ANA is below 1:40. Anything higher than that is considered positive. Angela's is considered QUITE positive!

On that note, I highly doubt that it is false positive. The chances of you having two tests showing exactly the same things WITH symptoms is highly unlikely. If you had no symptoms then maybe ONE would be a false, not two with the second one being more positive. Sheesh! I had about 20 doctors try and tell me that the Anti-dna test and 3 other Lupus related tests were false positive. My anti-dna was REALLY high positive too! This one is positive in a lot of Lupus patients and I have classic Lupus symptoms. Thank God I have a great Rheumatologist- honestly he is the best in the world! Went to England from Canada to get straightened out. Anyway!

This is the sort of info I found on Centromere pattern: Commonly this is what the centromere pattern means. anti-Centromere
ANA: Diffuse speckled nuclear
HLA type: Non-leucine residue at position 26 of HLA-DQB1 chain
Clinical
Systemic scleroderma: 33%; High specificity (99%)
Scleroderma variants
CREST (60% to 80%)
Raynaud's: Primary

The Primary Raynauds would definitely explain your symptoms of the cold feet and hands.

That being said, I have found more information that I can share with you

I found quite a number of articles that relate a positive ANA (centromere) with Antiphospholipid Syndrome(APS). Have you been tested for this? I can't remember if I asked you this. I really hope that you see the Rheumatologist this month. What worries me with you is the headaches. Those can be a primary symptom of APS! So I really hope that he/she tests you for APS.

I have also found some articles that do mention thyroid being included in causing a positive ANA. I am not sure if this fully fits your "picture" though. Since you have the headaches, cold hands and feet, and the aches you describe. I think that perhaps these could be explained more by an autoimmune problem rather than Fibro. I think you know what I think of that one!! Lots of doctors try and write patients off by saying that there problems are all related to Fibro. I disagree, and I am glad that you are seeking out help. Many people go 'Oh okay! Fibro is an answer' when really what fibro means is "muscle pain". There are people that do just have Fibro, but there are many more people that have autoimmune diseases that are being misdiagnosed. Anyway I am getting off of topic here! Here is some more info:

"A positive result on the ANA also may show up in patients with Raynaud’s disease, juvenile chronic arthritis, or antiphospholipid antibody syndrome, but a doctor needs to rely on clinical symptoms and history for diagnosis. "

Let's try and get away from the staining here, because yes that is important, but the more important thing is that you have a positive ANA.

"Scleroderma: About 60% to 90% of patients with scleroderma have a positive ANA finding. In patients who may have this condition, the subset tests can help distinguished two forms of the disease, limited versus diffuse. The diffuse form is more severe. Limited disease is most closely associated with the anticentromere pattern of ANA staining (anticentromere test), while the diffuse form is associated with autoantibodies to the anti–Scl-70. "

Do you have a positive Anti-scl-70? If you don't then you may have Lupus, Raynauds Disease, or something totally differetn going on autoimmune wise. Have you reviewed the symptoms of Lupus? Please be sure to also read the post I made here.. I also added the "alternate criteria" for the patient that is hard to diagnose.

Here is some more information regarding APS and Lupus and the centromere pattern on the ANA.

"Anti dsDNA was found in 22 patients with SLE although 46 patients with SLE were included in the series. Antibodies to Ro (4), La (2), Sm (7), RNP (4), and to the centromere (1) were also recorded -- usually in SLE patients."

So that means that you could still have Lupus! That was a study in the states that was done on patients. I will continue looking for information to put here for you, I hope that this clarifies things! I think what you need to do is sit down and look at your health history. Perhaps you can get your chart released from your doctor for a few days? Could you find your charts from when you were a child? that would be so helpful before you go to the Rheumatologist (I really hope you do go!). Anyway, I think once you put a "picture" together it will become more clear what is going on. Then- you need to write a symptom list- I suggest going from head to toe and writing everything down that is happening right now. After that, you will be ready to go! I really think that your ANA was NOT false positive. If you have autoimmune thyroid problems chances are greater that you can have more going on! Take care okay? Please let me know if I can help. Talk to you soon

~Angelic



 
Old 11-07-2003, 11:39 AM   #6
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AngelaA HB User
Hi Angelic!

Thanks for taking the time to post all this info. Sorry has taken awhile to get back to you. Well couldn't help the boards were down for days.

The dr that couldn't believe my ANA could possibly jump from 80 to 640 is now eating her words. She had me doubting my own self; I kept thinking maybe I misunderstood what my other dr said the results were. (The lab goofed up and sent the ANA results to a dr that didn't request it, but I saw her for my latest thyroid test and she had the ANA results there). Anyway the first doc called me and is saying "go see a rheumo ASAP".

I read over the list of Lupus symptoms and I don't feel that I am really exhibiting any of them. Obviously there is some kind of autoimmune disorder going on, but what I don't know. My hypothyroid condition was never diagnosed as autoimmune related. I am still somewhat suspicious of that considering my TSH and Free T3 goes up and down on same dose of meds, yet the thyroid antibodies tests that were run a few months ago were negative.

I continue to have extreme coldness in hands and feet, even when rest of body is comfortably warm. At times the coldness is excruciating and it is painful as if it was frostbite. Its so bizarre a feeling, yet it is something I have experienced for years and gets worse in winter. In past week I have been experiencing stabbing pains that come & go, in random places...arms, hands, feet, legs... though tends to happen more often in upper arm region for some reason.

Meanwhile I am still waiting for the first rheumy visit. Despite calling their office complaining of extreme discomfort and high ANA they would not move up my appointment. What tests should he be doing besides anti-DNA and what does a rheumo do on the first visit?

Angela




Quote:
Originally Posted by AngelicBrat
Hey again!

Sampy: A normal ANA is below 1:40. Anything higher than that is considered positive. Angela's is considered QUITE positive!

On that note, I highly doubt that it is false positive. The chances of you having two tests showing exactly the same things WITH symptoms is highly unlikely.

I will continue looking for information to put here for you, I hope that this clarifies things! I think what you need to do is sit down and look at your health history. Perhaps you can get your chart released from your doctor for a few days? Could you find your charts from when you were a child? that would be so helpful before you go to the Rheumatologist (I really hope you do go!). Anyway, I think once you put a "picture" together it will become more clear what is going on. Then- you need to write a symptom list- I suggest going from head to toe and writing everything down that is happening right now. After that, you will be ready to go! I really think that your ANA was NOT false positive. If you have autoimmune thyroid problems chances are greater that you can have more going on! Take care okay? Please let me know if I can help. Talk to you soon

~Angelic

 
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