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Old 01-09-2011, 04:57 PM   #1
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skbird HB User
Positive ANA for 20 years - nucleolar

Hello -

I am new here and wanted to know if anyone has had a positive ANA for a number of years but no specific diagnosis?

I am 39 years old, and I was first tested positive (that I knew of) about 6 years ago, with 1:320 nucleolar ANA. I went to a rheumatologist but subsequent tests found nothing except a positive ANA (this time 1:160).

I had it tested again last year by my family doctor and it is still 1:160.

Today, my mom gave me all my old medical paperwork from when I was growing up, and I saw that when I was 19, I had my ANA tested and it was positive, 1:160, nucleolar.

I have several food intolerances, have non-celiac gluten intolerance, endometriosis, interstitial cystitis, and migraines. I have read that endometriosis patients may have a positive ANA. I have also read that it's possible interstitial cystitis may be an autoimmune disease.

The last year I have been having my first real flares of interstitial cystitis (I was diagnosed 4 years ago by cystoscopy during my endometriois laparoscopy) and it's been pretty challenging. Stress makes everything worse. I also mysteriously injured both of my feet and have an ongoing injured shoulder of mysterious origins (going on 6 years now).

Though I've never been diagnosed with any rheumatic condition, I am curious - has anyone known they have had a positive ANA for 20 years or similarly long period of time? That seems unusual.

Thanks for your help.

Stephanie

 
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Old 01-30-2011, 10:29 PM   #2
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thinkfast HB User
Re: Positive ANA for 20 years - nucleolar

Quote:
Originally Posted by skbird View Post
Hello -

I am new here and wanted to know if anyone has had a positive ANA for a number of years but no specific diagnosis?

I am 39 years old, and I was first tested positive (that I knew of) about 6 years ago, with 1:320 nucleolar ANA. I went to a rheumatologist but subsequent tests found nothing except a positive ANA (this time 1:160).

I had it tested again last year by my family doctor and it is still 1:160.

Today, my mom gave me all my old medical paperwork from when I was growing up, and I saw that when I was 19, I had my ANA tested and it was positive, 1:160, nucleolar.

I have several food intolerances, have non-celiac gluten intolerance, endometriosis, interstitial cystitis, and migraines. I have read that endometriosis patients may have a positive ANA. I have also read that it's possible interstitial cystitis may be an autoimmune disease.

The last year I have been having my first real flares of interstitial cystitis (I was diagnosed 4 years ago by cystoscopy during my endometriois laparoscopy) and it's been pretty challenging. Stress makes everything worse. I also mysteriously injured both of my feet and have an ongoing injured shoulder of mysterious origins (going on 6 years now).

Though I've never been diagnosed with any rheumatic condition, I am curious - has anyone known they have had a positive ANA for 20 years or similarly long period of time? That seems unusual.

Thanks for your help.

Stephanie
Hello, Stephanie--
I, too, tested positive for ANA with the nucleolar pattern of 1:1280 about four years ago. I also am Rheumatoid factor positive, but I don't have any joint issues or symptoms. I do have acid refux problems, but was told it is not scleroderma since I don't have skin symptoms. People with scleroderma can be ANA positive with the nucleolar pattern.

I was first tentatively diagnosed with lupus, but more recently, I was "undiagnosed" and now told that I have possible primary sjogren's syndrome, due to dry eyes. I understand sjogren's patients may have a positive ANA with the nucleolar pattern. It's difficult having mysterious blood markers, but no definitive diagnosis.

Has anyone ever suggested you have fibromyalgia? I believe you can have mysterious joint and shoulder pain with that. Not sure if it shows in blood as a positive ANA or not though.

Do you have relatives in your family who have autoimmune conditions such as hashimoto's thyroiditis, type 1 diabetes or lupus? I have also read that a person with immediate family members can have low positive ANA results without ever fully developing an autoimmune disease. I believe your positive result of 1:160 is relatively low on the spectrum of positive results. Mine is much higher at 1:1280. However, it simply means that I more likely have an autoimmune process going on; but it does not mean that I have a stronger/worse case of anything.

Anyway, good luck with your situation.

Thinkfast

 
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Old 01-31-2011, 08:09 AM   #3
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Re: Positive ANA for 20 years - nucleolar

Thanks for your response.

I have been given the trigger point test for fibromyalgia a couple of times and been told I don't have it - I don't have pain in the areas they determine to be part of the criteria.

The most mysterious of my joint problems is my shoulder - I see a chiropractor and he's the third one to tell me I separated my shoulder (repeatedly?) and that's an issue with the ac joint, which is something that happens to people who play rough sports (which I do not) or have a fall and land on their hand which is trying to break the fall (something I do not recall happening). That is a tendon joint and it routinely goes funny on me, also triggering what he thinks might be thoracic outlet syndrome as my arm on that side, especially my hand, swells and has finger pain.

I also have three areas in my spine where I have disk problems which is really strange to me as I have never done anything to injure my back that I am aware of, however this has been going on for about 16 years now.

When I get pains in my shoulders or hands, I often will get sore toes. It feels like nerve pain, not muscle pain, since I can't rub the spot and make the pain worse. One of my toes has been red and swollen since last October.

I also have a hiatal hernia which I have to go have my chiro treat or else I have acid reflux on a daily basis. I don't have a difficult time swallowing exactly, but I do choke on water 2-3 times a week which is really annoying. (One famous time I was startled by a coworker and couldn't catch my breath for 5 mins and since my last name is Bird, he called me "Rainbird" from that point forward LOL!)

My IBS has been somewhat improved this last year but the endometriosis got no better at all after the laparoscopy, and the interstitial cystitis keeps getting worse. I found in the medical records from when I was 19 a urinalysis which indicated I had "too numerous to count" WBC, moderate epithelial, and few bacteria. At the time I was not aware I had a UTI nor was I given any meds for it. I think it's possible I've had IC all this time and it's only just gotten to some next level this last year.

I've read IC is now being considered in some cases a precursor to some connective tissue diseases, particularly Sjorgens, though I don't have any issues with saliva production. I do get the "piece of sand in my eye" thing every other week which persists all day and drives me nuts.

I'm pretty much laying it all out here. I don't have a family history of lupus, however Crohns, colitis, Celiac, endometriosis, and even interstitial cystitis all exist in cousins and aunts (not my parents or sibling). I'm also a redhead which seems to have some minor correlation, and have so many food allergies and intolerances it's ridiculous.

I have been doing more reading (I am also back in school taking biochem, physiology, organic chemistry, microbiology, etc) because I am studying nutrition, but am also learning about some of these other conditions. I also recently took the 23andMe gene testing kit (my brother's wife's cousin works there) so it'll be interesting to see what genetic tendencies I have.

I just want to feel better. Or at least have some understanding why someone who seems to be healthy has so many joint/disk problems and nearly every chronic abdominal disease/condition. And migraines. Blech.

Thanks again for your response and maybe I'll learn something else I can post that will unravel some of this for someone else.

Stephanie

 
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Old 03-17-2011, 04:27 PM   #4
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skbird HB User
Re: Positive ANA for 20 years - nucleolar

Just got my labs back and it says I have a positive test for ANA again. I am seeing my rheumatologist again who says "maybe" I just "run" at that level. We'll see - the rest of the specific tests will come back in the next few days, but my sed rate is low, I have negative rheumatoid factor, and he think I have fibromyalgia.

He said "I know, that can be seen as a wastebasket diagnosis, but people with endometriosis, interstitial cystitis, IBS, and migraines often all fit into the fibromyalgia spectrum, and while we don't know what it means, we know it means something." I really think it's amazing I can be uncomfortable so much all the time and have normal labs, except the ANA. I just wish I could figure out what ties it all together.

Thanks for any thoughts.

 
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Old 03-25-2011, 08:46 AM   #5
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Re: Positive ANA for 20 years - nucleolar

Yes I have had a positive ANA since 2000. I became sick in 1997 started with bouts of fatigue that became chronic, and it was downhill from there. I have muscle pains, only time my joints hurt is if I'm walking. I get mouth/lip ulcers I know are autoimmune. I now feel like I'm eat up with a nerve disease, neuro is suspecting MS. Hasn't always been like that. I get muscle spasms. Have shortness of breath. My muscles are so week. The fatigue is the worst thing for me. My ANA started at 1:320 and I had one doctor say it was autoimmune dysfunction and a rhematologist say it was early stages of Lupus. If you read my posts, you'll get the full spectrum of my story. My PCP said it was fibromyalgia. My rhemy said no way I had it, he did the pinpoint test on me. I seriously believe my PCP put this diagnosis on me all these years because he thinks it's all in my head, I have had my share of depression. His actions are speaking pretty loud lately. He won't help me and I know good and well that is why. When my ANA came back last year at 1:640, he did not even bother telling me. I have never had a high ESR, CRP, or RF blood test. No swelling, rashes or anything. Only thing apparent is I am bedridden with fatigue and pain. So last year, I had my ANA checked and my RNP was high. Doctor didn't do this, I had to. An antimalarial lowered my RNP and made me feel better. Plaquenil made me feel better for a few months. That is the only way I got my referral to a rheumatologist, he probably still thinks it's all in my head. I have MCTD. I don't care what he wants to think anymore. If a doctor blows you off, and you have a positive ANA that long, and symptoms to join it, you really need to find another one. Antimalarials lower our autoantibodies. Let them treat you and test it and see what it does if they don't believe it.

 
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Old 04-16-2011, 09:07 PM   #6
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RebelTiger03 HB User
Re: Positive ANA for 20 years - nucleolar

What the hell did I do with my body ??
thanks for information about Autoimmune...
at the first time I went to the Dr for my both hands & take blood test & week later
Dr found out that I had normal R.A. But the ANA is high--1,320....
I'm more freak-out now Because there is more dieases in my !@#@!# body.
I need friend now.................
I thought it was danger of ANA....

 
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Old 03-06-2012, 05:59 PM   #7
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21roslyn HB User
Re: Positive ANA for 20 years - nucleolar

My first +ANA was at age 39. I am trying to get my medical records to find out titer at that time. Now at age 62 ANA is 1:1280. For 23 years I have been waiting for the bomb to drop. My GP says I am a "red herring". I have NO symptoms of anything. Having retired 5 years ago I feel like a 16 yr. old. Ironically, I am healthier than anyone I know. I do seem to need (or just like) a lot of rest/sleep...and I enjoy it. I should mention that testing was done at age 39 for terrible, disfiguring rashes. After numerous specialists--just an allergy to quite a few chemicals. All I have to do is read the label on products I use. I am still worried and searching for others like me. Oh, pattern is speckled. Feel free to ask more--I would like to hear from you.

 
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Old 03-06-2012, 10:09 PM   #8
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skbird HB User
Re: Positive ANA for 20 years - nucleolar

I was supposed to go back to my rheumatologist last fall but I cancelled my appointment because he always says there's nothing coming up for me and he calls me his "little fibro patient." And that I'm just running at an elevated ANA naturally. Thing is I do have two autoimmune conditions, and a couple of others that sometimes present with elevated ANAs. It bothers me that doctors don't want to try to get to the bottom of things. Then, of all things, my husband just got diagnosed with an autoimmune disease - through AMA (antimitochondrial antibodies). And he has no physical complaints at all. A bit ironic. Unfortunately, his situation could get pretty serious as he looks to have primary biliary cirrhosis, so I'm not happy about that news. At least the autoimmune stuff I have going on isn't likely to put me in a serious health crisis. Hoping for the best for all of us.

Quote:
Originally Posted by 21roslyn View Post
My first +ANA was at age 39. I am trying to get my medical records to find out titer at that time. Now at age 62 ANA is 1:1280. For 23 years I have been waiting for the bomb to drop. My GP says I am a "red herring". I have NO symptoms of anything. Having retired 5 years ago I feel like a 16 yr. old. Ironically, I am healthier than anyone I know. I do seem to need (or just like) a lot of rest/sleep...and I enjoy it. I should mention that testing was done at age 39 for terrible, disfiguring rashes. After numerous specialists--just an allergy to quite a few chemicals. All I have to do is read the label on products I use. I am still worried and searching for others like me. Oh, pattern is speckled. Feel free to ask more--I would like to hear from you.

 
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Old 01-08-2013, 10:41 AM   #9
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Wink Re: Positive ANA for 20 years - nucleolar

Hi, I saw this thread and had to jump in. I am currently 38 and have had a high positive ANA, either 1:320 or 1:160, since I was first tested at age 28.

I was tested because I had some hives that disappeared shortly afterward. This started a cycle of testing, retesting, and being sent to a rheumatologist and an allergist, both of whom found nothing. I don't seem to have any real symptoms, though have experienced:

•a couple of strange nodular pustules over several months in 2006 that never returned.
•developed dermatographism (harmless condition where your skin forms hives in response to pressure/scratches that disappear within a few minutes) in 2009 - this may not be related but could explain the original hives
•slightly dry eyes. All this means so far is that I own a bottle of TheraTears, use it occasionally, and get told by the ophthalmologist that my eyes are a little dry. I have good vision so rarely go to the eye doctor.

When I got those pustules I went to a derm who told me I probably had "skin lupus", a really mild version of lupus. Not sure if that's true or if it means anything, because so far nothing has returned and it's been 5 years.

The allergist I saw in 2010 told me he was sure I would develop a a serious autoimmune disorder within the next five years (jerk - what kind of doctor says that?), or right after having a baby.

It's been 3 years, so I guess he could still be right though of course I don't want him to be, and I have no plans to have babies. I haven't seen a rheum in a while and my GP says there's no need to go more often than every few years unless I actually have symptoms.

Just wanted to weigh in to say it IS possible to have a positive ANA and be pretty much normal. I don't want to tempt fate, but so far the symptoms I have are things I would never even see a doctor for without already being clued in to positive ANA. I know there are other people like me out there because I've seen them on boards like this, and I think there's a lot that doctors don't know about ANA. If you are positive and relatively asymptomatic, I would advise you to simply focus on staying healthy, don't get talked into test you can't afford, and live your happy life.

 
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