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New, no diagnosis, high ANA, too much googling

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#1 FormerMermaid



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Posted 11 March 2008 - 01:09 PM

Hello everyone, I found this site through the extensive googling I've been doing since my primary care physician informed me last night that my ANA titer was 1:640, speckled and nucleolar. I've been having problems with joint pain/swelling in hands and feet, fatigue, morning stiffness, etc. since July. In Sept. I had an arthritis panel done and it was all negative. Last week my primary care physician did another one and all was normal except the ANA. I have an appt. with a rheumatologist on March 26, but in the meantime of course I've been researching, and apparently a nucleolar pattern is an indicator of possible sclerosis/scleroderma. I know I need further tests and an exam to confirm anything but my mind has a mind of its own, and it's freaking out. Any words of support or encouragement would be so greatly appreciated. Thanks in advance and best wishes,

#2 Guest_SADIE_*

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Posted 11 March 2008 - 01:19 PM

Welcome Former mermaid!! I wish I had some answers for you. You will be in my thoughts!

#3 Kamlesh


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Posted 11 March 2008 - 02:23 PM

Hi Former mermaid,
To be diagnosed with Scleroderma, it is not necessary to have any tests positive. Also, ANA can be high for many reasons. I will watch for any unusual symptoms like tightening skin any where on your body, short of breadth, fatigue, mouth dryness, etc. Any of these symptoms may require further detailed analysis.

I was diagnosed after 7 years and just based on tightening skins on face as well as ANA 1:640 speckled patterns.
Kind regards,


#4 Snowbird


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Posted 11 March 2008 - 02:38 PM

Hi FormerMermaid

I can only say...try not to read deeply into everything on the internet! I did that and had the same reaction as you, it scared the daylights out of me too! I know it's really, really, hard and much easier said than done, but try to hang in there rather than scare yourself with all the what if's while you wait for March 26.

This is a really good site, I have found a wealth of good factual information here from everybody (I joined last Nov). It's a great place to ask your questions, keep asking away. I hope you stick with us and keep us updated on what your rheumatologist tells you later this month. Good luck with your appointment.
Sending good wishes your way!

#5 Sweet


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Posted 11 March 2008 - 04:03 PM

Hi Andrea,

Welcome to the Sclero Forums. I'm so glad you found us. I'm sorry to hear about your positive ANA, but please try not to worry yet. There are many people with a positive ANA that don't' have any type of autoimmune disease at all. There are so many other criteria you need to fit into in order to be given that diagnosis.

With that being said, I am very glad you have an appt. with a rheumatologist. That is the perfect place to start. Until then, look around our site, ask any specific questions you have, and we'll try to help you out.

I look forward to knowing you better.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#6 yogabear


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Posted 13 March 2008 - 09:56 AM

hi mermaid and everyone else. hope all is well.

i have a high ana with a nucleolar pattern as well. I also have antibody to midbody, whatever that means. I've googled mine as well, and the combo of the two scares me, as they both are unusual, yet very specific for systemic sclerosis.

i have raynauds in fingers and toes, lots of dilated blood vessels on my chest which look like red freckles that blanch when oyou press them. a few on my face too. I've had reflux for a few years which is well controlled with medication. I have joint pain and stiffness...lots of it. that's what bothers me the most. but I have absolutely no swelling in my hands and feet.

my white count and platelets go up and down, but kidney function is fine. all of this started several years ago when I got salmonella, and developed itp (low platelets). I had back surgery in 2005 and all of the other stuff came knocking on my door.

my first rheumatologist called mine uctd, lupus-like, then changed it to mixed. my second called it limited with crest. I changed insurance and go to yet another doctor at the end of april, so we'll see what he says.

all I know is that I definitely have a connective tissue disease. I am on plaquenil and an nsaid called meloxicam which helps quite a lot. I have aches and pains, for sure, but all in all, I'm really pleased with these past three years.

this has been a very scary and unsure time for me, as I'm sure it is for you. please lean on the people here because they're fantastic. hopefully you come to have not much of anything. if you have more, however, know that you're certainly not alone.

very best of luck to you with a smile from rainy washington,

#7 WestCoast1


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Posted 13 March 2008 - 01:44 PM

Hi Andrea,
Boy, that is so normal to sort of "freak out" when you are facing something that you arent sure of. I am sorry that you are feeling so bad these days! Your dorctors apt is the correct "next step" in my oppinion. I would take a deep breath and try to see that this could have a positive ending. Hopefully your doctor can identify your pain and treat it properly. He should know all of the appropriate tests to give you as well.

I hope that you find comfort in that I am one of many here who are doing okay most of the time, and make it through the tough times together.

Please keep us updated after your doctors apt.