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Nucleolar ANA Pattern--Scleroderma or Lupus?

Hello,

Recently, I had two labs run ANA panels on me and they both came back as positive with a 1:160 titer result, Nucleolar pattern. However, everything else came back negative, including tests for anti-SCL 70, anti-SM AB, anti-RNP AB, anti-DS DNA AB by FARR, anti-RO AB (SS-A), and anti-LA AB (SS-B). My rheumatologist says I have either Scleroderma or Lupus, but I do not fit neatly into either one of those categories so he has decided to take a "wait and see" approach with me.

I have been having various weird things going on with me for the last 5-6 years. Those things have included: heart palpitations (60%-70% of the time), anxiety, malaise, occasional eye swelling (though not lately), lymph node swelling in my arm pit and temporomandibular joint (happened once in each location and I am currently experiencing myofacial pain in my tmj), all-over hair loss, occasional blurry vision, occasional cold and/or tingling sensation in my hands and feet (though no noticeable color changes occur), cystic acne, and mild joint pain in my knees, hips, fingers and lower back. I am also sometimes sensitive to touch or pressure (I bruise easily and my skin sometimes just hurts), as well as lights, smells, sounds, etc. Echo, EKG, standard blood work and full Thyroid panel present as normal. Fibromyalgia has been ruled out.

Recently, I was under a tremendous amount of stress (I'm am attorney) and so I had some sort of attack for about three weeks. During that time, I experienced a drunken feeling, especially when walking, palpitations, random muscle spasms (especially in my legs), tremors/trembling, chest tightness, fatigue, all-over weakness, and all-over shakiness.

I have since improved; however, the results of my ANA tests are now back and I am a bit overwhelmed. My ANA was tested at my own prompting after researching all my symptoms on the Internet.

I guess my questions are:

1) Are there any more tests to determine if I have one disorder as opposed to the other?

2) Is it a good idea to just wait and see what symptoms I develop over time in the event that I do have Scleroderma or SLE? (I have heard that early treatment of SCL can perhaps alter the course of the disease.)

3) Can a Nucleolar pattern ever mean anything else besides SCL or SLE?

4) Are there people out there with the Nucleolar pattern who never develop full-blown symptoms of SCL or SLE?

Thanks so much for your time.
9 Responses
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Avatar universal
Thanks for all the replies, etc. it ended up being Mast Cell Activation Disorder.
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Avatar universal
Also though remember that when you have one autoimmune it is common to possible develop other autoimmune conditions as well.
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Avatar universal
The Nucleolar pattern typically points toward conditions such as scleroderma and crest syndrome which is a sub-type of scleroderma. Here is a link to the information I have.

https://fpnotebook.com/Rheum/Lab/AnStngPtrn.htm
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Avatar universal
ANA 1:80 2 YEARS AGO. LAT YEAR 1:60. THUS YEAR 1:40. DR SAYS FYBROMYALGIA. I AM SICK ALL OF THE TIME! SHE SAYS IT'S NOT NECESSARY TO KEEP RETESTING.
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2 Comments
Hi!, I am not a doctor but there is a Fibromyalgia Blood Test which is FDA, CLIA and CAP approved now. If you ask your doctor about it, he will tell you there is no such thing. BUT there is. This could help you with your diagnosis, especially if it comes back negative, and unlike the RA blood test which is 50% accurate, the Fibro blood test is 99% accurate! I know its real because my insurance company paid for it!. If you think this will help you, go to the FMTest.com they will direct you on how to obtain it. Also, they have a Facebook site, FM/a , it has a lot of information. Plus their phone number is listed and they will speak to you. NOT everything is Fibromyalgia. Good luck.
My issue ended up being Mast Cell Activations Disorder. Fibromyalgia is a garbage can dx and doesn’t explain what’s really going on. Check this out: http://www.mastcelldisease.com/mast-cell-disease-fibromyalgia-connection/
Avatar universal
Check for Hemochromatosis {ferritin, TIBC, transferrin} excess iron in body can be inherited DNA test, also should test Magnesium RBC test, Zinc, Iodine, another test if you have animals or have ever been around them Toxoplasmosis check theses out on internet sites and be tested especially for Hemochromatosis  
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Avatar universal
I just found out I have a positive ANA and titer 1:320 and Nucleolar pattern.
I have an appt with a rheumotologist on Thursday.  I am really nervous.  I have had really bad muscle weakness, fatigue, shortness of breath dizziness,  hair loss and reynauds.  I wanted to know if the nucleolar pattern could be something other than scleroderma.
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2 Comments
Wow you and I have very close blood test results as well as symptoms. My first rheumatologist is January 6th. What were you finally diagnosed with? I pray you are doing well.
Wow you and I have very close blood test results as well as symptoms. My first rheumatologist is January 6th. What were you finally diagnosed with? I pray you are doing well.
Avatar universal
I had asked on the forum something like you but nobody ever responded.  Maybe somebody can point a direction for me.  For 10 years I always had patterns of speckled and homogeneous and nothing else.  Now all of a sudden it is Nucleolar and for 10 years it's ALWAYS been positive.  It's always 320 and just once in April it was 640.

I'm being sent to a Hematologist because of the problem with the white cells.  My neutrophil # is only 0.5.  I always have low neutrophils and white count is 2.1.  But my Rheumy noticed how my neutrophils are getting lower.  If anyone wants the numbers of lymphocytes and monocytes and neutrophils# I can tell you if that helps.

The Rheumy didn't seemed too concerned with nucleolar because I alway switch to the other 2 patterns anyway.  What could this be pointing to?

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Hemochromatosis
Hi postie. I know this is an old post, but was just searching the web for some information around my ANA pattern, which is homogenous and nucleotide.  I was diagnosed with Lupus in 2014.  I saw this post of yours which talks about your neutrophil count and I wondered if you ever got any answers.  Although I have my lupus quite well managed with diet and lifestyle interventions I have had persistent low neutrophil counts, like you around 0.4 - 0.6.  I would be really interested if your resolved  Thank you Helen
Avatar universal
WOW. I was Googling to find out more about my recent test results. Twice, two months apart, I have had my ANA come back 1:160 and nucleolar. I see my Rheumatologist on Wednesday. I have Ankylosing Spondylitis, and recently went through a major battle with lung disease. It was during the treatment for the lung disease that I had the ANA test done. I'd never heard of anything other than speckled pattern ANA until the last week. While I'd never wish autoimmune disease on ANYONE, I have to admit it's comforting to me to hear that other people are going through this too. Thank you for posting.
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Avatar universal
I too tested positive for the ANA antibodies of 1:160 and nucleolar pattern.  My doctors think I have rheumatoid arthritis, but it looks like most people with the nucleolar pattern have systemic sclerosis or lupus.  Rheumatoid arthritis and lupus run in my family so I'm just being sent to a rheumatologist for further testing.  From my research, it looks like it's either SCL, SLE or RA, in that order.

My symptoms are extreme fatigue and swollen and aching joints.  Sometimes I feel a burning in my joints, especially my knees, elbows and wrists.  It feels like I have a bad sunburn, but on the inside--not on my skin.  I too have tingling of my hands and feet, especially if I exercise (which is supposed to improve circulation).  I recently lost 57 lbs. by exercising 7 days a week for 1 1/2 to 2 hours a day.  Right now, I'm lucky if I can make a 3-mile walk once a week.  Let me know if you find anything else out.

Best wishes.

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