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Elizabeth28

Positive ANA, SCL-70 but no symptoms - are other people in the same situation?

39 posts in this topic

Hi Madrigal,

 

It's good to hear from you again and I'm sorry to hear that you're suffering with pain in your toes and feet and also experiencing some joint pain. My joints are also quite painful, so I can empathise! I've included a link to Neurological Involvement to give you some more information and which I hope you'll find interesting.

 

Certainly your positive attitude will help you and I do hope that your rheumatologist appointment will go well.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Madrigal

 

It's possible to have positive blood work with no symptoms and also symptoms with negative blood work. Either way it can be like walking a tightrope, wondering what's coming next, all you can do is live your life in the meantime.

 

Making contact with your rheumatologist is a good idea and let us know how you get on.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Madrigal,

 

It is great to hear from you again!

 

Just out of curiousity, have you consulted your general practitioner about the joint pain and neuropathy yet?  It can be very helpful to have them narrow down the playing field before you see the rheumatologist.  For example, they could run some tests to rule out diabetes, which can also cause joint pain and neuropathy. Having this already ruled out would help make the most out of your rheumatology appointment.

 

Unfortunately, even people with scleroderma, or with scleroderma antibodies, can also acquire any other disease known to mankind, in fact we might be even more prone to stumbling upon other health issues than the average person, so the more common causes need to always be suspected first and very carefully ruled out before anything is chalked up to scleroderma.

 

I'm not saying your symptoms are due to diabetes (or anything else), simply that having all of your symptoms investigated by your general practitioner promptly, to narrow the playing field prior to any rheumatology visit, can be extremely useful.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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I too have tested positive for ANA SCL-70 and have no symptoms of an autoimmune disease. I'm looking for people that are in my situation.

 

I have stressed over this all day, and can't think straight. Only thing I can defer from this is that the test is not diagnostic.

 

My doctor advised me to see a rheumatologist, and suggested that patients suffering from autoimmune disease test negative on their ANA.

 

Any advice from the forum is greatly appreciated.

 

I forgot to mention that a year ago, I had my complete thyroid removed due to two microscopic cancer cells, and subsequently my blood work shows antibodies. At times it is as if the further they dig the more they find with no answers, but stressing me out.

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Hi mimi g,

 

I am sorry that you are getting stressed about a positive SCL-70 and would like to try to put your mind at rest.

 

The first thing you need to accept is that a diagnosis of Scleroderma, or Sjogren's, or Lupus or any one of a myriad of other Autoimmune disorders, is based on symptoms.   For Scleroderma, as you have probably realised if you have read very far through these Forums, there is a small(ish) group of very specific symptoms which can add up to a diagnosis.

 

First of all, most of us have Raynaud's Phenomenon, then possibly one or more of Sclerodactyly, Calcinosis, Telangectasia, Esophagael dismotility and/or thickened skin on hands and limbs.   I personally have no thickened skin except for the tips of my fingers so it took many years for anybody to realise what it was that I was suffering from.   In my case I had most of the symptoms I have listed here and then an ANA was done with a result of 1:1280 Centromere pattern and that was regarded as a confirmation.   As far as I can remember my SCL-70 is negative.

 

I am not a doctor, nor do I have any sort of medical training so I can't give you any suggestions that I would expect you to believe BUT I do have  Limited Systemic Scleroderma (and Sjogren's and Primary Biliary Cirrhosis)  and I know that it is something I would rather not have so I do understand your concern.   You will quite likely get more confirmation from other members who have very aggressive symptoms and negative ANA.

 

We would hope that you can stop stressing and get on with life.   I would be silly to assume that you have no reason to have had an ANA done so no doubt either something will turn up or nothing will.

 

Best wishes

Judyt

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Hi Mimi g,

 

Welcome to these forums!

 

I'm sorry to hear that you're worried about having possible Scleroderma.

 

I would reiterate Judy's advice; although blood tests can be a helpful technique in the diagnosis of Scleroderma, they are by no means conclusive as it is quite possible to have positive antibodies and yet never develop the full blown disease and vice versa, as many of our members can testify.  I've included a link to our medical page on Autoantibodies to give you some more information, but although like Judy, I have no actual medical training, I suggest that possibly the antibodies in your blood tests could be a result of your thyroid removal.

 

Now that you've joined our community, I do hope that you will be able to feel less anxious as stress can exacerbate any illness. Please do keep posting and let us know how you're faring.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Thank you Judy T and Joelf.  I have to admit, yesterday was the toughest day ever. Sometimes I wonder, if that test had never been done, we wouldn't know anything because no symptoms were present.  I have to internalize the fact that the diagnosis is based not only on your ANA but symptoms.  I'm curious if there are many out there who test positive with the ANA SCL70 but exhibit no symptoms throughout the course of many years? I guess I am looking for the light here, a good thing to come out of this?  Are there many out there who test positive for years and years and are relatively healthy?

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Hi Mimi,

 

I think we do have members, who've had positive antibodies and yet have never, even after many years, developed the full blown disease. It's impossible to quote any figures as Scleroderma affects all sufferers differently (some much worse than others) which is why the clinical symptoms are more relevant than blood tests. To give you an example, I have the positive AntiPM/Scl antibody which can be an indication of Scleroderma overlap with Polymyositis, but so far (touch wood!! ;)) I don't appear to have developed Polymyositis. Actually I found the diagnosis fascinating and had many hours of pleasure researching all the details of the extensive tests I had from my various consultants. (I am a bit sad though and probably should get out more!! ;) :lol:

 

I've given you a link to our medical page on difficult diagnosis to give you some more information on this very complex disease.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Thanks Jo, for your advice. It's just so frustrating, like one of the members said before either you do have it or you don't.  So why do doctors place so much importance in the blood tests, if clinical symptoms aren't apparent.  They contradict themselves, and instead, patients live in fear wondering am I okay, am I not okay, am I going to get sick, or is it just one of those flukes?

 

You all have been a blessing!

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Hello Mimig

 

The best thing you can do is go on and live your life only giving the possibility of scleroderma a thought or two if you ever develop any symptoms. I have been involved with these forums for years and over that time people with positive ANA but no symptoms, have come and gone and so far none have returned to say they have developed symptoms.

 

I have systemic and localised scleroderma but negative ANA & SCL70, if you have a look at the video diagnosis of scleroderma it explains that blood test results alone should not be used to diagnose or rule out scleroderma, history and clinical symptoms are key.

 

I hope this helps and take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Mimi,

 

Welcome to Sclero Forums!  I'm sorry that you have concerns about having a positive SCL-70 but no symptoms of scleroderma, and send my best wishes to you.

 

One thing I really can't figure out, from your posts so far, is why did your doctor run the SCL-70 test in the first place, if you are not having any sort of symptoms?  It's not normal practice to run ANA panels on perfectly healthy people. Therefore, it really begs the question, why did your doctor run the test in the first place? 

 

I really hope you take the opportunity to sit down and discuss your test results with them so that you can come to a better understanding of your test results in light of your symptoms (or complete absence of them).

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello everyone,

 

First, I would like to apologize if my English isn't good or approximate; it's because I write to you from France.

 

I've posted here because I found here some responses that I never had on a French forum.

 

I have, like some of you, the SCL 70 positive but no symptoms. My doctor prescribed me this blood analysis because I have Vitiligo and it can associate to other autoimmune diseases.

 

I don't know what to think... I feel lost, between the immensity of information on the internet and the silence of my doctor...

He just says to me that if I haven't any symptoms, there no need to do some other medical investigations, but I live in the fear, with the feeling it will come some day or another.

 

Is it possible to never have this disease even if the ANA are positive?

 

I'm really sorry for you if you have to live with it and I'll be thinking of you.

 

Kind regards,

 

Helene

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Hello Helene

 

Welcome to the forums!

 

Many people have visited this forum asking the same questions you are now so you're not the only one. The answer is the same, it is possible to have positive antibodies and never develop and symptoms of scleroderma. Equally some people, of which I am one, have scleroderma but negative blood work and it's never been positive.

 

You see, scleroderma should be diagnosed using a combination of clinical symptoms and medical history, using blood work and perhaps biopsy, only to confirm diagnosis and further categorise the type of scleroderma. Have a look at our videos diagnosis of scleroderma, difficult diagnosis and symptoms of scleroderma.

 

If you have no symptoms of scleroderma then I suggest you just see it as an anomaly and carry on regardless. As it is entirely possible you will never have scleroderma you don't want to look back and realise you've spent any time worrying about something that never happened!

 

Take care and if you have anymore questions please post them.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Helene,

 

Welcome to these forums!

 

Amanda has given you some very good advice, which I hope has reassured you a little.

 

I've included a link from our medical pages on Vitiligo, which I hope you'll find helpful and interesting.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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