Positive ANA and Subsequent Negative ANA

[macy1029]

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

[AngelicBrat]

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

[macy1029]

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

[AngelicBrat]

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

[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.