Positive ANA w/ Nucleolar Pattern - Anyone else?

[bee781]

Hi everyone, I recently came up with a positive ANA at 1:640 with a nucleolar pattern.  I read that this is typically indicative of scleroderma and the idea frightens me!  Does anyone else have a nucleolar pattern but does NOT have scleroderma?    Right now my symptoms are extreme fatigue, joint aches, muscle aches, occassional numbing and tingling.  These have all come about in the last 9 months or so.  I have no skin hardening/tightening.

[bee781]

Looks like this thread won't let me post my email so you can just send a message to my medhelp inbox.  I really would like to help others as I was terrified back then when I was going through this.

[bee781]

Lily, please see my recent post to the thread.

http://www.medhelp.org/posts/Autoimmune-Disorders-/Positive-ANA-w--Nucleolar-Pattern---Anyone-else/show/1101098

[Veronicacordero]

Hi bee, first, un from Spain and my inglish is not good. Im 25 and I had exactly your titer and your Pattern.  

[bee781]

Hi All! It's me again providing an update many years later. I still do not have scleroderma. I have not rechecked my ANA since it came up negative many years ago. But since I am getting many messages with questions, I will tell you what I did.  First, research mercury poisoning. That was the root of my problem. If you google "positive ANA nucleolar pattern" you will find many studies linking mercury to a positive ANA with this pattern.  How might someone get mercury poisoning? Well, for me it was my silver dental fillings. Many people don't know that these fillings contain poisonous mercury.  I had these fillings since I was a child and was fine but one day my dentist told me that one of my fillings was leaking and that I should get my filling replaced. I didn't think it was a big deal since my teeth felt fine so I left it alone.  A  year later was when I got the positive ANA result.  After doing some research I remembered what the dentist told me and then researched mercury poisoning. So I hired a holistic dentist to carefully remove my mercury fillings and replace them with white ones. PLEASE do research before undertaking something like this, as sometimes the mercury fillings removal process can make things worse.  Do NOT go to a regular dentist to have these fillings removed. Find a holistic dentist that knows about the proper procedures.  After that I did some chelation to remove the mercury from my system.  Again, this is another very dangerous process if not done correctly.  Do NOT take any heavy metal chelators without FIRST removing your dental fillings otherwise it can make things worse.
For those of you who cannot afford to remove your fillings, go on an anti-inflammatory diet.  After all, auto-immune conditions are all primarily an inflammation in the body so if you eat anti-inflammatory foods your prognosis is great. I found a story online of a woman who completely reversed her scleroderma by changing her diet.  Good luck all!

[blynn1222]

I am going thru the same thing too..I have to wait 6 weeks to see the rheumo! Very scarey.

[Lilylara]

Any news?

[ambernoelle1019]

I know this was a few years ago, but just curious if you ever found out what was wrong? All of those symptoms are unfortunately very familiar to me :-/.

[tar777]

I have gone through ANA test which showed positive (titre 10). Positive Nucleolar . What dose this mean and how it can be cured ,
Thanks

[bee781]

Hi all, it's almost 4 years since I posted on this tread and I'm still doing just fine. Will try to respond to all the messages  getting from people. :)

[JDil]

Bee,

Hope you come back to this thread and post any info, suggestions or help.

[Rudi69]

Hae a positive ANA 1.8 with nucleaolar pattern. Symptoms: severe neck pain, headaches , pain throuout body. Muscles and joint hurt and ache. Diff swallowing. Significant weight loss, 26 lbs in 1 month. Extreme agiation and anger. Dropping things, bumping into things. Losing balance,blurred vision. Cough w colored discharge that wont go  away despite 2 weeks of zpack.Fingers ache. Cant wear bra, necklace or seatbelt. loss of words and expressing myself. severe depression (4 yrs w ect tx) w bouts of hypomania. 4 thyroid nodules and the list goes on. icthing all over. cant sleep feeling exhausted. PLEASE HELP ME>

[Lilylara]

Hi I have the exact same sympthoms. Im scared ANA 1:320 nucleolar. Help!

[autumnspell]

I am going through this same scenario right now and I'm frightened beyond belief.  Please share more of your story as any hope would be welcomed.  Positive ANA nucleolar pattern and joint swelling/pain.  Scared to death to even look up scleroderma!

[bee781]

It's been over 3 years since I posted this thread. I am happy to say that not only do I NOT have Scleroderma but I'm also fine and did not go on to get any auto immune disorder. My symptoms are gone. Email me at ***@**** if you want to know about my story and how I took matters into my own hands to prevent a disorder. My ANA test is now normal.

[Lilylara]

Pls help lily_lara@hotmailcom
Same sympthoms. ANA 1:320 nucleolar

[AutoSomething]

I am in the process of being diagnosed with an auto immune disorder,... Man this is confusing 1st blood test ana nucleor and homogenous 640 with neutrophils low, 2nd blood test homogenous pattern 1280, all physical symptoms are so vague aches, pains, heart palpitations occassionally, muscle weakness slight, dry eyes, dry sinuses, dry throat, hoarse voice, lymph nodes tender, ... Going to rheumy this week again,.... Any questions i should ask? Ive read everything he gave me,...clear as mud now

[ItchyLittleTexans]

ISAVRIL, did you find out anything from your doctor's visit?  I'm going through the same thing right now.  Ugghhhh!

[lsavril]

I just got a positive ANA and have the Nucleolar pattern with titer 1:320. I have an appt with the rheumotologist on Thursday.  I have all over fatigue, muscle weakness, numbness and tingling in hands and feet.  Mostly hands and the Reynauds. I don't have skin tightness.  I want to know also can the Nucleolar pattern be from something else.  This is really scary.

[karajo]

The best advice I could give you is to try your best to stay calm.  There are many really good and affective treatments, so whatever you are dxed with, there is usually a treatment.  Stress only makes symptoms worse.  

The part where you said you had burning upper back pain that affects you chest.  That sounds like it could be fibromyalgia.  It is not uncommon to have fibro along with an autoimmune disorder.  

I am not personally familiar with scleraderma.  But take some time and read up on the symptoms.  I copied something out one of my sister's books on scleroderma.  It list the symptoms as:  The skin and the esophagus are almost always affected.  Patches of skin become shiny and uncomfortably tight and the espophagus stiffens.  (does any of that sound familiar?)  

It would be a good idea to research the nucleolar pattern and what that might point to.  Sometimes it doesn't mean anything unless it is a certain amount.  What was your ANA level?  Usually other labs are off too.  Like sed rate and other inflamatory markers.

[christine145]

I agree. It seems we as patients need copies of all our records these days. Well the symptoms have been odd. I get this burning upperback pain that seems to affect my chest wall. This comes and goes, I had headaches.. on bout that lasted for 18 days. Had an MRI and it was normal. I have noticed that my skin is itchy.. no real rashes, but then again I always itch in the winter months.. One other thing I tend to get from time to time is boils in my groin. A dematologist told me it was a form of folliculitis. I've also had an issue with mild sinus tachycradia.. that had been investigated in just about every way by a good cardio doc.and a doc who specializes i the electrical pathways of the heart.. Have had every heart test minus a cath. Lung nodule found.. during a CT and is  beign watched. It has not gorwn a bit in over 18 motnhs so my pulmonary doc does not think it's a cancer.. but will keep an eye on it. Lungs over all look clear and healthy, I get dizzy from time to time and I get night sweats. I was told i'm in peri-meno.. and have anxeity. I am not buying all this anxeity crap. I have a feeling I have an auto disease.. and need to get to the bottom of this. There is NO way in my mind that all of this can be in my head. And Scleroderma can be fatal.. this worries me. I'm sooo mad right now. Any thoughts for me??

[karajo]

Yes, it is always good to get copies of every test that is ever done...and make a file for your personal records.  And if I ever get a CT or X-ray, etc done, I ask for the actual film on a disc.  I can view it on my computer, make a copy and take to other doctors who can load it on their computer and actually see the test w/o subjecting you to more radiation.  

  Nucleolar pattern are not seen in SLE, but suggest scleroderma.  

What kind of symptoms are you having?

[christine145]

OMG. I'm glad I found this thread. I am sooo beside myself right now. I have been going through odd symtpoms for the last 18 months. I've had all cardio, lung and blood tests you can imagine.. they say I'm fine it's all in my head. So, I'm having a hard time beliveing this andI  just swithced primary docs. I picked up my records to take to my new doc and what do I find in them.. a couple thing's that were not even disclosed to me. One after looking up is not inportant.. but the other a  borderline postive ANA with a Nucloer pattern in my mind is, the report says possible systemic sclerosis.. OMG.. and the doc never told me nor did he order any more tests. I'm scared and sooooo confused. It could be serious..and he just let it go. the ANA was taken back in april of 09. WTF??

[fhoole]

Hello Bee!

Yes, but no.  

My usual homogenous pattern ANA suddenly changed to homogenous / nucleolar at 640.  The pattern has remained the same for two years.  

At the same time, long standing battle with interstitial lung disease became fibrotic, and I was hospitalized with a shower of blood clots (from dvts) in the lungs.  The skin around my ankles has become shiny and tight.  

For me, this is just one more adventure in autoimmune melt-down.

My advice is to be sure you have an excellent rheumatologist.  The 640 ANA means something is going on...not necessarily scleroderma.  Be educated. Don't panic.  Don't assume the worst.  Do live well and enjoy life!

Best Wishes,  Fran    

[bee781]

Doctor, I will have my GP run the tests you suggested.  Thank you.  If I am found to have mycoplasma species and chlamydia pn does that mean I will get scleroderma?  Is it possible that I have a curable infectious disease only and not an autoimmune disease?  Thank you.

[Garth L Nicolson, PhD]

ANA patterns do not necessarily indicate a particular disease.  There are several criteria for scleroderma, and you may only have a few characteristics.  Since most scleroderma patients have chronic infections like Mycoplasma species and Chlamydia pn., this would be a place to start looking.  These infections can cause inflammation of peripheral nerves causing tingling, numbing and pain, rheumatoid arthritis symptoms, muscle pain, extreme fatigue and other symptoms.