Positive ANA-Anxiety--Please help

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LMD023
Regular Member


Date Joined Aug 2015
Total Posts : 24
   Posted 8/25/2015 6:28 PM (GMT -7)   
HI everyone. This is long--and I'm sorry. Last Friday, I got a phone call from the urgent care (I went because I was sore on my back with swollen lymph nodes). They had run a panel of tests and everything came back normal, except a positive ANA-- 1:320 homogeneous. I also had a UTI.
Of course I panicked all weekend. I had what seemed to be a panic attack early this weekend-and anxiety is lingering.

Part of the reason I'm writing is just for a release, but I'm also wondering how a steroid shot may or may not affected the ANA or the normal blood work taken? They gave me a steroid shot in my hip for inflammation and sent me on my way. Wouldn't that bring the ANA down? In your experience, would the ANA be higher than the 1:320 because of the shot approx. 18 hours prior?

My RA appointment is not for another couple months!! I can NOT wait that long to get follow up tests! How do I know that my organs are not involved? Or that it isn't something else entirely (like cancer)? I feel like I'm wasting time! I had an ekg today....which was clear. My urine is normal (besides uti) and they have normal numbers of blood work for kidneys-- I'm hoping that says that the kidneys are not involved. What about the lungs? I'm having tight neck and throat and deep breathing....but I'm thinking it is more anxiety issues rather than lung.

I'm a mess here, obviously...

The physician assistant who saw me today refused to do follow up blood work because she "didn't know what tests to order". I'm 30 years old. I've had approximately 7 years of body pain (back and rib/chest). I've had an x-ray in 2010 that said mild scoliosis and costochondritas (spelling?). I've chalked my pain to those two things and dealt with it with normal advil, etc (Dr. suggested foot lift for one shoe). The ANA is making me crazy! I can not live my life for the next 2 months wondering if I'm sick--or very sick.

Thank you in advance for reading my vent...and answering my questions.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/26/2015 12:53 AM (GMT -7)   
First, take a deep breath and slowly let it out. Stress just makes us feel worse.

Now, some basic facts....
Lupus is diagnosed with a list of 11 indicators. You must meet 4 out of the 11 to have lupus. Positive ANA is just one. You can have a positive ANA and not have lupus.

There are many things that can cause joint and muscle pain...fibromyalgia, low vitamin D, low magnesium, arthritis, etc....

The rheumatologist will be able to determine what is happening with you. Until then try to focus on relaxing and avoid "Dr. Google". It will just freak you out unnecessarily.

You might want to ask your doctor for something to ease your anxiety.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7604
   Posted 8/26/2015 8:39 AM (GMT -7)   
Ok, like Joy said, take a deep breath. Worrying about what the ANA might mean isn't going to make things any better (or worse, for that matter.) Giving yourself an anxiety attack will only make things worse.

ANA isn't a reflection of inflammation, so a steroid shot for inflammation isn't going to change the ANA reading. ANA is a very general indicator, so reading up online about what it might be will only bring in information about all kinds of things that it probably is not, and worry you even more.

If your organs were involved you would be feeling VERY SICK. From what you've said your diagnoses of mild scoliosis and costochondritis match the symptoms fairly well.

You might call your rheumatologist and ask to be put on the cancellation list so that if someone cancels you can be seen more quickly. Other than that, just be gentle with yourself, try to get deep restorative sleep, mild exercise, and avoid junk foods.

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

LMD023
Regular Member


Date Joined Aug 2015
Total Posts : 24
   Posted 8/27/2015 6:02 PM (GMT -7)   
I thank you both for your input! I'm very much having a difficult time understanding this and having to begin this "journey" at 30 with 2 young kids. I'm now a tad stuck on the neurological Aspect of lupus. I'm a high anxious person (running a business and homeschooling kids)...I'm busy! :) I've been anxious for years, but I wouldn't say depressed, until now. I sometimes have numbness in parts of my body--never for long, but possibly notable. I also find myself replacing words quite often. I'm wondering if I'm trying to make this worse than it is or if I'm really have nervous central issues. Do lupus patients have nervous system problems that can be reversed? I've read (yes I know, I should stop reading) that nervousness central issues are the worse kind of lupus.
How long have you lived with it? What life-changing modifications did you have to make once diagnosed to stay healthy?

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7604
   Posted 8/27/2015 6:08 PM (GMT -7)   
Yes, Lupus can cause some significant cognitive dysfunction -- I've been there. And you can recover from it, I have.

BUT STOP NOW. STOP READING. STOP WORRYING. STOP OVERTHINKING.

Something as simple as a B-12 deficiency and some stress can cause some fuzzy thinking that leaves a person at a loss for words. Yeah, you can find horrible, horrible diseases that might explain your symptoms.

Or you can be using the power of your mind to create and inflate symptoms that are nothing more than the annoyances of daily life.

Please put your focus on TODAY. Don't worry about tomorrow. You've set up your appointment, made your list of questions & symptoms (see Lupus 101 for hints if you haven't), now put it aside and live in TODAY.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/28/2015 11:56 PM (GMT -7)   
Hi There:

I have to agree with both Lynnwood and Joy! You're only making your situation with anxiety worse, by "searching" on the net. You need to stop and just take a deep breath in and out and try to relax.

Trust me I understand all the stuff with lupus is serious, but one thing you may not have read or maybe over looked, is that "ALL" lupus patients are different. Some patients have the disease so mild they DO NOT REQUIRE MEDICATIONS. Other patients (like me) are so ill that nothing seems to work. I've had lupus since I was 23 and I am now 50.

I had a child and she is now 22, just graduated from college and we've all managed to deal with my illness. My daughter has had a positive ANA 1:640 since she was 7 years old. She still to this day HAS NOT developed lupus or any other Auto immune disease. Do I worry about her, you bet, she's my only child. Does she worry about it, rarely does she give it a thought.

Please take our advice and stay away from all the information on the internet. Do as the others have suggested, get on the cancellation list, and just go on about your business. It sounds like you're a very busy lady. Focus on your kids and your job and they here and now, I'm sure there are plenty of items you can do to keep your mind busy and not worrying about lupus.

I went 13 years before getting my official diagnosis and starting treatment. Waiting 2 months isn't going to cause anything that will make things totally worse, "IF" you even have lupus.

Hang in there and let us know how things things turn out for you.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

D-concerned
New Member


Date Joined Sep 2015
Total Posts : 5
   Posted 9/10/2015 1:54 PM (GMT -7)   
Hi Everyone I'm new here an much like the person who's post I just read, I just received a positive ANA test this week and I am very concerned about what it might mean.  Mine is 1:160 which isn't through the roof, but is outside the norm and the way my doc presented it, it has me scared to death.  I don't understand all of this and what it might mean but my test was listed as finely speckled - does that mean anything good or bad?
 
The symptoms that brought me to the doc was just generally feeling very unwell - flu like symptoms that went on for several weeks but seemed to be getting worse.  Very tired and just feeling like crud.  I had recently (6 weeks before this started) weaned from several antidepressant meds that I had been taking for many years.  Originally associated the bad feeling with withdrawal but after six weeks I should have been getting over that.  So he cast a general net of tests - all came back normal accept the ANA at 1:160.  I know none of you are doctors but can you help me put a some kind of gauge on how concerned I should be by this result. 
 
I'm a 56 year old male and in generally good health - a little arthritis in the hips and a ton of anxiety and depression but other than that no real problems.
 
Thanks You

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7604
   Posted 9/10/2015 5:13 PM (GMT -7)   
The biggest thing that a positive ANA tells you is that you should get checked out by a rheumatologist. It doesn't have to be anything, and worry generally just amplifies any mild symptoms you might be feeling. A GP or PCP just isn't trained to diagnose or treat auto-immune diseases, and has no business scaring you.

Even if you do have a auto-immune illness, in many instances they are quite treatable. First lines of defense are Plaquenil and Prednisone, then if symptoms aren't controlled there are meds like Imuran, Cellcept, and MTX. For more serious cases, there are newer treatments such as Benylsta and IVIG.

These types of illnesses are hard to differentiate and diagnose, and a rheumy might try some medications to gauge your reaction before offering an actual diagnosis.

So, get thee to a rheumy, and let us know how it goes.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

D-concerned
New Member


Date Joined Sep 2015
Total Posts : 5
   Posted 9/10/2015 7:28 PM (GMT -7)   
Thanks for the answer. My doc ordered a second round of labs to see what the positive ANA was caused by. He said he would be referring me to a rheumatologist depending on what the new labs show. Sounds like I need to find myself a rheumatologist no matter what the family doc says.

You are right about the worry. I'm prone to big time anxiety and It's been working overtime ever since I got the call from the doc - and it makes me physically ill.

I've seen other posts on the site saying not to worry and there are treatments, but i guess the concept of potentially having something serious wrong with me is what I'm not dealing well with. My doc was not willing or able to say anything about the seriousness of the concern. I would assume, the higher the ANA the more serious the condition? is that true?

I guess I will learn more as I move through the process but like so many others - I'm scared and looking for some help and hope that I can live and enjoy life even if this turns out to be something bad.

thank you again for taking the time to answer and for taking the edge off of the worry for me!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7604
   Posted 9/11/2015 5:40 AM (GMT -7)   
No, higher ANA doesn't mean the worse the condition. Auto-immune diseases are unique in being diagnosed by a collection of symptoms, not by a single test or blood test. And the results of any single test don't show condition severity - that is also all by symptoms. This is part of why you need a rheumy - other Drs aren't as aware of these complexities.

Check out the link Diagnosing Lupus below.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

LMD023
Regular Member


Date Joined Aug 2015
Total Posts : 24
   Posted 9/11/2015 8:41 AM (GMT -7)   
Hello! I'm the original poster here.
I was extremely anxious about my positive Ana (1:320 homogeneous). My primary took more blood and it was 1:160. I actually got in to the rhuemy this past Tuesday and she did the entire work up. Waiting for results. :(
Unfortunately, my anxiety shifted during this time, when some blood work showed elevated bilirubin. So I got an ultrasound (with had been done also in 2009 and 2011). They found that my gallbladder polyps had grown in the past 4 years and the surgeon is suggesting removal. :(
Gallbladder polyps are rarely cancerous, but of course I have that in my mind....thinking maybe Ana was raised due to cancer cells floating around. (Ps. That is not likely either....but my anxiety is through the roof).

Trying to attack one thing at a time and the gallbladder surgery is first. My follow up rhuemy appointment is on the 21st to go over blood work.

Id like to suggest that you take a deep breath about your high Ana. I started to realize I was a tad silly with the anxiety attacks regarding the possible lupus diagnoses---as I'd rather be discussing lupus right now that my gallbladder surgery and rapid growing masses.

Prayers and positive thoughts for you all.

LMD023
Regular Member


Date Joined Aug 2015
Total Posts : 24
   Posted 9/11/2015 8:46 AM (GMT -7)   
With that being said....has anyone had gallbladder removed with lupus? Will it make things worse? i realize you can live with a gallbladder, but I'm curious as to long term effects without that organ and managing lupus. Any incite? (Ps. I have not been diagnosed with lupus yet)

D-concerned
New Member


Date Joined Sep 2015
Total Posts : 5
   Posted 9/11/2015 11:38 AM (GMT -7)   
Again I thank you.  I checked out the link you suggested for diagnosis and to be honest, the only symptom I truly have is extreme fatigue.  I do have some joint and muscle pain but I was diagnosed with OA years ago.  it gets worse when I do physical work but does not really slow me down or prevent me from doing anything.  Maybe I'm barking up the wrong AI condition.
 
I will take all of your advice and make sure to find a good rheumatologist after results from my latest labs come back.
 
Another dumb question while I'm here.  Is it possible for positive ANA to be caused by something - infection/virus etc. that then returns to normal later?  Sorry for the continued questions - just trying to learn while I wait and wait for test results.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7604
   Posted 9/11/2015 11:51 AM (GMT -7)   
I had my gallbladder removed in 2005, after having had Lupus for 3 years. I was having issues with gallstones and that was the recommended treatment.

The gallbladder surgery was same-day/outpatient with no complications, and overall it had no effect on my Lupus. I know some people have problems eating greasy foods after gallbladder removal, but honestly, it's never bothered me at all.

While I did have some GI issues with Lupus, they didn't seem to have anything at all to do with the gallbladder and resolved themselves when the Lupus got better.

Hopefully your situation is resolved as easily as mine was!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7604
   Posted 9/11/2015 11:52 AM (GMT -7)   
Yes, you can have a positive ANA for no discernible reason, and later find it is no longer measurable. It doesn't always mean there is anything funky happening!!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

LMD023
Regular Member


Date Joined Aug 2015
Total Posts : 24
   Posted 9/11/2015 9:00 PM (GMT -7)   
Lynnwood- thank you for the reassurance with the gallbladder removal! I've scheduled it for Wednesday and praying the pathology from the polyps are benign!
Also, should be receiving my rhuemy blood work results his week...

Big week! Eeck!

I turned 31 yesterday and got a little "out of whack" with why these things are happening now....im so ready to move on from this medical junk! Aren't we all :)

D-concerned
New Member


Date Joined Sep 2015
Total Posts : 5
   Posted 9/18/2015 2:36 PM (GMT -7)   
Hello folks - labs all came back negative except something called Smith Antibodies. Haven't talked to my doc about it yet so I'm not sure how concerned I should be. Mine came back at 1.0 which seems to be just outside the norm. Does anyone have any experience with the Smith Antibody? Thanks!

LMD023
Regular Member


Date Joined Aug 2015
Total Posts : 24
   Posted 9/18/2015 6:35 PM (GMT -7)   
I don't know too much about all the specifics....but with the blood work I just got back, they had a "sliding scale"--which was negative, moderate negative; moderate positive; and positive.

Because I had only the ANA positive, the scale took me to a "moderate negative" for lupus. I have my follow up on Monday to go over the blood work.

I imagine if you have an ANA positive and elevated smith antibodies that may mean something. Or nothing. I only remember seeing the "Anti-smith" on my bloodwork, but could not tell you what it is. :/


Do you have a follow-up scheduled to discuss your blood work?

D-concerned
New Member


Date Joined Sep 2015
Total Posts : 5
   Posted 9/19/2015 4:12 PM (GMT -7)   
My family doc who has been ordering the labs is setting me up with a rheumatologist. Not sure how long that will take. I see the family doc again on 9/28, but I think he will defer to the specialist on this.

LMD023
Regular Member


Date Joined Aug 2015
Total Posts : 24
   Posted 9/21/2015 1:51 PM (GMT -7)   
Update: Today, I saw a the dr. for the follow-up (after taking blood work).
She has diagnosed me with Sjogrens. I'm not really sure how to feel about this.

MY ADVISE panel was basically all negative except my ANA 1:640. I was concerned about the "nuclear dot" pattern...but she assured me that it was not very significant and said she does not believe I need to follow up with a Gastro (despite mildly elevated bilirubin and low alkaline phosphate). I was a tad shocked. I had myself convinced I was having an auto immune related liver issue!

She check my mouth (dry) and said "I believe you have Sjogren and we will start you on Plaquenil". I do not have any eye involvement, that I believe.

Lupus and Sjogrens sound very much the same. I read Sjogrens also often gets mixed with MS and many many more auto immune diseases.....so I'm not sure whether to be relieved of this diagnosis or terrified of getting more in the near future?

I've read that Sjogren has be mild for your entire life with minimal issues....but is that true with a high ANA and being only 31? Can Sjogren stand alone forever?

Also, why medicate already? Once I start, it is for my entire life, according to Rhuemy. I do feel achy and tired, but I'm wondering if slight relief would even out weigh the medicine side effects?

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7604
   Posted 9/21/2015 2:49 PM (GMT -7)   
If your symptoms and blood work all go negative, after awhile they will take you off the Plaquenil, it doesn't have to be for life.

Yes, Sjogren's can be your primary illness, and yes, it can remain mild for life. I have Sjogren's secondary to Lupus and have dry eyes and dry ears -- but they can go for long periods without any issues, then once in a while I'll get symptoms again. I'm in a kind of remission now, I don't take anything for Lupus or Sjogren's.

Check out the Sjogren's forum for suggestions on over-the-counter relief for the dry mouth issues.

Did you mention all your other issues, like the Costochondritis and hip inflammation to the rheumy? Those often accompany Lupus or similar auto-immune diseases.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

LMD023
Regular Member


Date Joined Aug 2015
Total Posts : 24
   Posted 9/21/2015 7:06 PM (GMT -7)   
Yes, I did mention Costochondritis and the hip issues on my first visit. She was very busy recording everything, so I imagine she took that in account when she made her diagnosis.
After she said "Sjorgrens," I asked her mainly about my current symptoms: tight throat/jaw; feeling as though there are lumps in my throat; and dizziness. It appeared she made her "Sjorgrens" decision right then and there in that moment.
I sometimes forget to mention the costochondritis and lower back/hip pain....because these are my every-day aches and pains that I've become accustomed to. They are painful (at times fairly debilitating), but I've learned to live with them for 7-8 years...so when the doc asks "what are your symptoms today"....I only think of my newer ones, instead of the constant every-day ones.

I know, in reality, it doesn't matter....but is Sjorgren's a lesser disease than Lupus? It seems like they are very similar--both can have organ involvement, but have the same types of aches and pains. Is one more serious than the other? It appears that Sjorgren's in more common.

LMD023
Regular Member


Date Joined Aug 2015
Total Posts : 24
   Posted 9/21/2015 7:16 PM (GMT -7)   
actually, I just remembered that she made a comment about my "sternum pain" (which I suppose she means the costo). She said that "Sjogrens can certainly cause that kind of pain".
I wish I would have researched Sjogrens before hand. I felt like a deer in headlights because I had basically no questions to ask about the disease (because I hadn't read up on it). Now, after reading up on it, I feel like I'm not sure what made her say Sjogrens over Lupus? Only the dry mouth?
*deep breath*
Maybe it doesn't even matter at this point. Maybe the important thing is that I'm being monitored. I'd just like to have a better grip on it. It's a little hard to plan for the future (or envision what it will be like) not knowing if I'll have a life time of severe or mild illness.
I know, it sounds a bit dramatic, I'm just venting. :)

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/21/2015 10:05 PM (GMT -7)   
Hi and welcome to our forum, I'm sorry that you've had to join us. This is a great place to get support and information on how things are going with lupus and other auto immune disease. I'm not around here a lot as I'm very ill with my Lupus/RA/LGL Leukemia.

I noticed that you are very worried about your ANA of 1:640 and organ involvement. I just wanted to pass on something to you and hopefully it will help you feel a bit better about thing. My 22 year old daughter has had a positive ANA of 1:640 since she was 7 years old.

She shows very few signs of lupus or any other auto immune disease. She does get some rashes on occasion and has joint pain from time to time. Otherwise she's been just fine without her having ANY auto immune signs.

I hope that the Plaquenil starts working right away and you begin to start feeling better really soon. Please feel free to stop by and ask any questions you have and someone here will have an answer for you.

Love,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

LMD023
Regular Member


Date Joined Aug 2015
Total Posts : 24
   Posted 9/22/2015 9:52 AM (GMT -7)   
HI Barbara! Thank you for the welcome! I'm so sorry to hear of your illnesses! I see that LGL leukemia is something often times related to auto immune diseases? I have a long line of family history of cancers (specifically leukemia)....so I'm pretty alert and try to educate myself when it comes to auto-immune related cancers (so I can stay alert to my own body).
Positive thoughts and prayers coming your way with your battles!

Thank you for the story of your daughter with positive ANA and no signs. I have 2 daughters (7 and 3 years old) and I'm very concerned about their future in regards to auto-immune issues. I will know not to freak when one of them has a positive ANA now :)

A month ago when I wrote the original posting, I was beyond anxious. Although I am still very anxious; I am hopeful too. I know that it will NOT be fun living with a chronic illness....but my plan is to stay ahead of it and be able to catch everything else early!
I appreciate you guys!
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