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Scleroderma diagnosis with negative ANA


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#1 ez62

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Posted 10 November 2008 - 06:10 AM

I have read that 10 to 40% of people with sclero have a negative ana. Just wondering how many here fit this category, and on what basis were you diagnosed-thanks!

#2 Sheryl

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Posted 10 November 2008 - 07:59 AM

ez62,
I don't have any of my initial paperwork but I was told my ana was negative. I was diagnosed on severe bowel and bladder issues and raynauds and very tight skin. Also nurses had a hard time putting in the IV without blowing my veins. So after the 4th person came and relieved my tension by getting the IV in place she was the first one who asked if I had been told about autoimmune diseases. I just said no and shrugged it off. Then while in the operating room the doctor and staff were trying to pinch skin on my fingers. I lay there wondering what in the world are they doing that for. I was listening to my doctor explain procedures that were going to take place. I was a little perturbed that he kept trying to pinch my skin. I finally said something like what does my skin have to do with this surgery. And right away he got back to business. Later telling me about his diagnosis of my having Scleroderma (limited) with Crest. That was the basis of my diagnosis.
Strength and Warmth,
Sheryl

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#3 Amanda Thorpe

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Posted 10 November 2008 - 08:06 AM

Hello Ez62

This has to be one of the mostly frequently asked questions so you're in good company. :)

I have a negative ANA and have diffuse SSc. I was diagnosed as a result of examination (tight, restricted skin most everywhere) and the diagnosis was confirmed by biopsy results which followed after, although the biopsy was done first.

The fact that scleroderma can't be diagnosed or dismissed by one test contributes to the misdiagnosis and time it takes to get one!

I heard that 5-10% of us have a negative ANA but then let's face it they don't really know how many of us there are (we could rule the world!) so they're not gonna be sure how many have positive/negative ANA.

Hope this helps.

Amanda
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#4 lizzie

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Posted 10 November 2008 - 08:42 AM

Hi ez62, I had positive ANA at time of diagnosis , but diagnosis based on Raynauds and nailfolds, loss of digital pulp and skin changes on fingers. Then had negative ANA for a while, now back to positive ANA.

Lizzie

#5 shennen0820

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Posted 10 November 2008 - 04:09 PM

Amanda...when you had your skin biopsy what did the results show...mine came back showing morphea and the dermatologist had it changed to sclero (as he said it would pull more weight with the insurance company stating sclero)...so I am still confused as to which type I actually have. The dermatologist stated that I have both types...

Thanks Shennen
Shennen

#6 Amanda Thorpe

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Posted 10 November 2008 - 05:18 PM

Hello Shennen

My diagnosis was made upon exam then confirmed by biopsy results.

Apparantly you can have systemic sclerosis and morphea plaques, just read it on the MayoClinic site, news to me.

Hope this helps.

Amanda
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#7 canon

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Posted 10 November 2008 - 05:36 PM

Hi ez62,

My diagnosis was based on symptoms, esophageal, raynaud's, sclerodactily of fingers and the red cheeks with red spots/lines on the face and inside lower lip. The red spots (talengectasia) are on the hands too with some non-related sclero things. They also said my nailfolds are positive. My ANA has been a high positive or completely negative. It has also been more negative than positive.

With gentle thoughts.

Judy
A happy heart is good medicine.

#8 GocartMoz

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Posted 11 November 2008 - 03:52 AM

I have diffuse as well, with a negative ANA.

#9 shennen0820

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Posted 11 November 2008 - 04:04 AM

thanks for the info...I will check out that site
Shennen

#10 Wohali

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Posted 11 November 2008 - 06:09 AM

I'm not sure how to answer. I have positive centromere ANA for CREST/Limited Sclero. I do have symptoms of the limited Sclero part of CREST however if tested for plain ol Sclero those antibodies are considered negative though I have a small titer that comes up. Though my doctors have said most people will always have some tiny amount of antibodies for one or more autoimmune diseases. Just about every autoimmune illness I have been tested for I have some tiny amount of antibodies for though only show up as positive for CREST.