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Old 10-25-2003, 12:58 PM   #1
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Smile Positive ANA and Subsequent Negative ANA

HI All

I am a newbie on this board and I have a question. I have been dx'ed with autoimmune disorders about 4 years ago. I had two ANAs taken about 2 years apart--both were positive. The first was 1:80 and the second was 1:320. I saw an immunologist recently who took my ANA agin, for a 3rd time, and this time it came out negative. I was very surprised at the results. Does this mean I have no autoimmune disorders? Has anyone else experienced this or do you know anything about this? I was not on any DMARDs when taking this test (cannot be any longer cause I also have Selective IgM Deficiency--but that is beside the point) And whatever I have is NOT in remission--never has been--at least I judge this by how I feel). Thanks alot.

Dana

 
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Old 10-26-2003, 11:33 AM   #2
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Hi Dana!

I love your name- that is my real name too

Your ANA can fluctuate! If it is negative it does NOT mean that you don't have an autoimmune disorder! They can go from positive to negative every day of the week depending on what is going on in your body. What autoimmune disorder were you diagnosed with? What are your symptoms? And the blood work sometimes does the opposite thing for us. When we have really awful symptoms it will be negative, and when we feel good it is high positive sometimes!! Isn't that crazy!

Don't let a doctor tell you that because your ANA is negative that you DONT have an autoimmune problem. If you have symptoms and the blood work then you have it! Anyway, hope this helps.

~Angelic

 
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Old 10-26-2003, 12:09 PM   #3
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HI Angelic

I never liked my name untill I was in my 20s--I always thought it was so weird when I was younger. Do any of us ever like what we have???

I have always had high sed rates and crp rates. My ANA was high also untill a new doc (an immunologist whom i was seeing for SIgMD) decided to test my ANA again. It came back negative. But at the same time my CRP and sed rates were high still. I was very suprised. I have been dx'ed with RA, Sjogrens, and Polymyalgia Rheumatica. I have other health problems but they are not caterogized as autoimmune. My symptoms are symetrical joint pain in almost every joint , muscle pain, extreme fatigue, feeling of malaise at times, sometimes a low grade fever, toe joints beginning to become deformed, iron deficiency, dry eyes and once in a while swollen neck glands and some other symptoms that I cannot think of right now. My right hip is also "bone on bone" but my rheummy wants me to put off surgery as along as I can because I am "too young" (boy, I havent been told that in a long time!!)He also said my left hip will be that way soon along with both knee joints.

This immunologist is young and actually I don't have much faith in him. What can you do? I hate doctor shopping. I just went to him because my IgM is low and my rheummy was concerned about it.

DO you have RA? If not, what do you suffer from? Thank-you for taking the time to respond to my email--I appreciate it.

Dana

 
Old 10-27-2003, 10:07 AM   #4
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Hi Dana!

I hated my name too when I was younger, mostly because people said it wrong. Mine is pronounced like "Day-na" but lots of people still say "Dahna" I hate that!

I have Lupus, Sjogrens Syndrome and a blood clotting disorder called Antiphospholipid Syndrome. It took me 10 years to get diagnosed- I had 4 positive blood tests related to Lupus that doctors tried to hide from my family when I was younger. I also had a CT scan that showed brain clots! At that time I was paralyzed from the waist down and had problems with headaches, hairloss, rashes, etc Lupus symptoms! So over the course of the last 10 years I have had flares galore. And all these doctors have ignored my symptoms and basically some tried to say I was crazy!! Isn't that ridiculous? We just found out about all of these tests from 10 years ago last year. I ended up getting out of Canada in order to have a fresh opinion. I had gone out of the province I live in to see if that would help me. All the doctors did there was call my specialists here and come to the same conclusions of "We may never know what you have". That is such a load of crap! I look like a poster child for Lupus!

So that led me to Dr. Hughes in London England. He diagnosed me in about half an hour. He told me that if you have the blood work at one time in your life and if you have symptoms now then you have Lupus. Blood work is so hard to depend on because it can fluctuate from day to day, minute to minute! Your doctors should be watching your ESR and CRP. My ESR goes wayyyyyyyy up but I have a Mycoplasma bug that is chronic; this can mask my blood work for autoimmune diseases! SO that is why my tests are negative. Mycoplasma is an odd one, the type I have causes people to have pnemonia but then its supposed to go away. Not in me though! I always test positive for it, and will until they treat it with high dose antibiotics. Its so crazy! Anyway- are you sorry that you asked what was going on with me? LOL The Antiphospholipid Syndrome is a blood clotting disorder. I have blurred and double vision and major probs with headaches, migraines, tingling and weakness on one side of my body etc. That is being treated with warfarin and already my headaches are gone and my "brain fog" is better! So life is getting on the right road. I am a very positive person despite everything I have been through. I just think that if I can help other people taht are going through the same sort of thing, all the better! Take care Dana, talk to you soon!

~Luv, Dana

 
Old 11-09-2003, 09:52 AM   #5
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I too had several ana's positive and high several yrs ago. They were so high my doctor ordered 2 additional testings, still the same. I went to a rheumy and was told I was fine. Well I';m not. My recent ana was normal, but I have all kinds of crapola going on, porokeratosis, arthritis, ddd, and now a bad problem with my abdominal pain. I'm calling my gastro tomorrow, as I had polyp removed several yrs ago and fearing another. This skin deal is worse again, and not feeling well, scared. Its so strange how blood work can be ok, cbc etc.
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Old 11-10-2003, 03:31 AM   #6
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ANA etc are parts of a jigsaw. +ve ANA doesn't equal auto-immune disease anymore than -ve equals no autoiimune disease. +ve ANAs esp in older age groups are reasonably common

 
Old 11-18-2003, 08:05 AM   #7
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Quote:
Originally Posted by cardinal
I too had several ana's positive and high several yrs ago. They were so high my doctor ordered 2 additional testings, still the same. I went to a rheumy and was told I was fine. Well I';m not. My recent ana was normal, but I have all kinds of crapola going on, porokeratosis, arthritis, ddd, and now a bad problem with my abdominal pain. I'm calling my gastro tomorrow, as I had polyp removed several yrs ago and fearing another. This skin deal is worse again, and not feeling well, scared. Its so strange how blood work can be ok, cbc etc.
[FONT=Comic Sans MS]Well I am glad to know that I am not the only one who has tested positive twice for Lupus and then Negative. I thought I was going out of my mind. I have a rhuematologist who I am not sure believes me. but he saw me when I had my unexplained bout with Menigitis, which they say the Spinal Tap came back neative but I had every single symptom of it. the said I was Asymptomatic. He also treated me while I was pregnant on the advice of my OB, and helped me through the horrifying Carpal Tunnel I experienced during pregnancy. After I had my daughter, about 6 months to be exact I was hospitalized with menigitis. Since then I have suffered very severe headaches and vision problems. I have seen my Dr who says I am nuts and i do not have lupus. I even gave her the number to my rhuematologist so she can see my records there. After a Ct Scan and numerous meds that dont help, I just deal with my headaches now. I get them about a week before I menstruate and they last fior about a total of 2 weeks and they are accompanied by dizziness, fatigue, vision gets very blurry. I got a new Dr and told her what I have been experiencing and that I have Lupus she siad "How do you know you have Lupus?" I said because I tested Postive for it years ago, and have been seeing a Rhuematologist, but I am allergic to Prednisone. She said "well tahn I wouldn't be going around telling people you have Lupus" I was like yeh ok so thanks and bye.
I feellike I am always facing this, i have been tested for Fibromyalgia and they said no, then they thought Chronic Fatigue and they said no. I am so fustrated. But I can tell you my jopints hurt soo much, sometimes it is as if soemone has poured gasoline on my joints and lit them on fire. My fingers are already starting to deform from the arthritis pain. I cannot handle being inthe sun. I get violently sick. I did have a rash one time, I am very tired and I get very weak very fast. Plus my headaches.

So its a relief to know, I am not the only one who finds Dr's that have no idea.
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Old 11-19-2003, 02:04 PM   #8
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Hi everyone,

IF your ANA is positive AND you have symptoms consistant with an autoimmune problem then you have it. End of story! And it doesnt matter if your blood work is not positive today, it matters if it has been positive in the past and you have symptoms. I am so tired of these doctors saying that an ANA is false positive when really its NOT. They tried to tell me that an Anti-DNA test that i had done was false positive. There is NO way that an anti-dna can be false!! Especially because mine was HIGH positive and I had 3 other tests positive at that time. Sheesh!

I travelled to Dr. Graham Hughes in London England because I wanted an end to the fighting. Everyone here in Canada told me that all of my blood work is false positive. Well guess what! Its Not!! Dr. Hughes told me that there is zero possiblility! So you guys that have positive blood work and symptoms.. get to a doctor that is going to get you diagnosed. Even if your symptoms are not that severe, they can get worse! And blood work often is opposite of how we are feeling (which is nuts I know!) With me, if I feel really crappy my blood work is negative but when I feel good something comes back positive! Lupus and other autoimmune diseases are really complicated. If you have the blood work and the symptoms then you need help! There are so many people out there that wished that there blood work was positive so that they could get diagnosed. Take care

~Angelic

 
Old 01-20-2004, 11:16 AM   #9
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Re: Positive ANA and Subsequent Negative ANA

I had a positive, low titer, speckled pattern (twice a few yrs apart), then was negative.

 
Old 01-20-2004, 11:35 AM   #10
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Re: Positive ANA and Subsequent Negative ANA

they can go positive to negative with regards to how we are feeling. The body can fix itself easier in the first stages of Lupus too, causing the ANA to go negative. That is why many Rheumy's don't just base the diagnosis on blood work NOW, its all the past blood work too. Gemi- with a speckled pattern, Lupus is more evident. Anyway- take care!!

~Angelic

 
Old 01-26-2004, 02:20 PM   #11
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Re: Positive ANA and Subsequent Negative ANA

Quote:
Originally Posted by AngelicBrat
they can go positive to negative with regards to how we are feeling. The body can fix itself easier in the first stages of Lupus too, causing the ANA to go negative. That is why many Rheumy's don't just base the diagnosis on blood work NOW, its all the past blood work too. Gemi- with a speckled pattern, Lupus is more evident. Anyway- take care!!
~Angelic
Over the last year or so, I had new things happen that would help me reach the criteria needed for that. Next flare will see what a new doctor thinks. Sometimes I don't know which way to turn.

 
Old 06-12-2006, 02:38 PM   #12
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Re: Positive ANA and Subsequent Negative ANA

Hi All - just wondering if anyone knows of someone testing positive ANA and not had an autoimmune disorder. I was just tested and the ENT is considering a diagnosis of autoimmune inner ear disease (AIED) as the ANA was "seriously high" and I presented with all symptoms for AIED except hearing loss.

Thanks!
Cookie

 
Old 06-12-2006, 04:56 PM   #13
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conductor HB User
Re: Positive ANA and Subsequent Negative ANA

Hello,

I don't usually look at this board, but the title caught my eye.

My troubles started in 1987, when I started college. I went through every possible symptom: severe (migraine-type) headaches, unspeakable pain throughout my body (peripheral neuropathy), several grand mal seizures (non-epileptic), extreme and unusual exhaustion, repetitive pleurisy, halting malaise, stomach ulcers, constant fevers, etc. Oh, and I had acute glomerulonephritis when I was in 3rd grade.

After going to over 25 doctors (and even having my tonsils out during one particular goose chase), a doctor just happened to request the Lupus Anticoagulant test. This came back positive. So, I was told that I had the LA. It still took several more years of trial and error for someone to put all of these symptoms together plus the positive ANA. Also, there is something to do with my "sedimentation rate" that helped point to my final diagnosis: System Lupus and the Lupus Anticoagulant. I probably left something out, but you get the idea!

BTW, I was sent to two different psychiatrists because my primary doctor really thought I was losing it or that I was a hypochondriac. However, the psychiatrists stated that I was doing reasonably well considering all of the health problems I was dealing with--especially the pain.

Now, I am on disability. I could no longer teach school, so I learned to be a medical transcriptionist. But, that also got to be too much. What has saved my life, though, is having a great doctor who deals with my Pain Managerment !! For the pain, I use Duragesic, Dilaudid, and Actiq. Without these particular medications, I don't know where I'd be. Plus, it took a long time to find the right medications for me.

Thanks for your posts! It reminded me that living with autoimmune disorders takes support from everyone. I appreciate the sharing I found here.

Sincerely,
Jon (Conductor)

 
Old 08-07-2006, 04:45 AM   #14
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Re: Positive ANA and Subsequent Negative ANA

Hey

interesting stories on here, certainly made me feel a lot healthier and a bit of a silly considering apart from being tired i don't have a huge lot of complicated systems. Just a very good surgeon and now a good physcian.
i have just recieve a postive ana and i am being tested for lupus, although i didn't get to seem my usual physican, and i am still hoping it turns out to be sjogrens rather than lupus.

the one think i don't seem to able to find is the statistic on false positives, i think i would rather it be all in my head then actually have lupus.

cutecat

 
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