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


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#21 Jeannie McClelland

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Posted 05 May 2009 - 05:27 PM

Hi Ladybug,

Just a quick welcome to the Forum and a thank you for posting. I was sorry to read you have neurological problems from Guillain Barre Syndrome. Did you know we have a section on it here? It might be interesting to you.

It's so hard not to worry and even harder not to know exactly what we should worry about and what's not of concern, isn't it? We do know stress can adversely affect one's health, so I think you'll see the advice "Try not to worry!" posted time and time again here on the Forum.

We have a great page on Autoantibodies in Scleroderma has a great deal of information on the subject, including varying views on the presence of antibodies as diagnostic and prognostic tools. It's my understanding that, as your doctor said, there is still much uncertainty on the subject.

Again, a warm welcome to the Forum and best wishes,
Jeannie McClelland
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#22 ladybug

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Posted 06 May 2009 - 12:58 AM

Jeannie,

Thanks for the warm welcome. I have been upset about that stupid blood test for almost a year now. The Rheumatologist I saw said that I shouldn't worry a minute about ever getting scleroderma. ( Easy for him to say.) My dogs vet, believe it or not, gave me the best explanation of all this. She said that we build antibodies to many things: colds, viruses. etc., and that they stay in our bodies a long time, and sometimes forever. She also said that sometimes we have antibodies to something that we never get symptoms of, and because only a few people are actually ever tested for ANA and specific antibodies, we really have no idea how many people have antibodies that are benign.

thanks,
Ladybug

#23 madrigal11

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Posted 03 November 2009 - 09:09 AM

I'm so happy to find this post. I tested positive for scl-70 about 3 years ago and have been retested over and over about every 3 month by my rheumatologist. I am asymptomatic so far as well other than some minor aches and pains.

I have some other issues going on and the Sclero factor is only making things very frustrating. I have had some significant hip pain for about 8 months and have had no help from my rheumatologist. They just last week gave me a Bursa shot to treat for bursitis, but I have not had significant relief. Now I also have a group of lymph nodes enlarged in the groin area. I had an ultrasound done and just had a follow up CT (results on THursday) but everyone's response to me is that it may be related to Scleroderma or it might not.

I get so frustrated, like many of you, with the back and forth. Either I have it or I don't. And if I don't, which my rheumatologist is treating me as such, then why is everyone so quick to blame all my issues on something I may not have.

I have also tested low for Vitamin D and took a supplement for 8 weeks. My primary care retested me about a month later and levels are currently fine.

I am exhausted all the time. When you tell some one you are so tired and they say "I know how you feel," I want to shout that they have no idea at all. No one can know what this kind of fatigue is unless they have experienced it. Sometimes I have to slap myself awake to stay awake.

I think that this disease is still not well understood and because of that, I don't feel I'm getting all the answers I need to have peace of mind. I really appreciate reading all of your posts in here to know that I'm not alone. I just want to know where I stand.

#24 Jeannie McClelland

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Posted 03 November 2009 - 09:43 AM

Hi Madrigal, welcome to the Forum!

I'm sorry you are having health issues and the worry of "is it or isn't it?" It's incredibly frustrating to be in that position. You've come to the right place, though. I daresay many of us have had the same experience.

We have a good section on fatigue and in it there's a sub-section called "Coping with Fatigue". I've found it to have some very helpful tips. The Mayo Clinic's article on cancer and fatigue has great advice that is applicable to our kind of fatigue too.

I've also got friends who don't have the faintest idea what the fatigue we experience is really like and that has added to my frustration (and anger) at times. There is a great article called The Spoon Theory that gives a wonderful method of getting the message across.

I had to smile at your mention of bursitis in your hip, not because it's funny, but because I've got that T-shirt too. I was more than a little cross when my rheumatologist seemed to be dismissing the hip pain, shoulder pain, elbow pain. He stock answer is physical therapy. Well, y'know, it worked for me. Doing all the exercises keeps those spots pretty pain free.

Will you post often? We'll all be keeping our fingers crossed that the CT results are good.

Best wishes,
Jeannie McClelland
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#25 madrigal11

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Posted 29 June 2013 - 09:27 PM

I was diagnosed with clear Scl-70 antibodies and a positive ANA panel about 6 years ago. The diagnosis came about because I had a bout of parvo and presented with multiple joint pains. Initially, I went to my Rheumatologist every 3 months or so for follow-up. Eventually I started going less often because I have no significant symptoms. Like how many who said before that they had low vitamin D I also have had that problem. It seems to be a persistent issue. I have some joint pains and seem to have a lot of pain in my toes and feet. I also seem to have a bit of neuropathy in my feet. My Labs show that I do have a significant amount of inflammation. But the whole I do not have any skin involvement at this time and seem to have no significant internal organ issues.  I am due to a visit to my Rheumatologist since I have not been in about 2 years. But I am living my life as though I do not have this disease. The uncertainty can drive you crazy so I just choose to act like everything's normal. This forum is great for people like us so we don't have to wonder and be alone and have no idea what's going on.



#26 Joelf

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Posted 29 June 2013 - 09:58 PM

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,


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#27 Amanda Thorpe

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Posted 30 June 2013 - 06:01 AM

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.


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#28 Shelley Ensz

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Posted 02 July 2013 - 08:57 AM

Hi Madrigal,

 

It is great to hear from you again!

 

Just out of curiousity, have you consulted your GP 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 GP promptly, to narrow the playing field prior to any rheumatology visit, can be extremely useful.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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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.

#29 mimi g

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Posted 22 July 2013 - 04:10 PM

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.

#30 judyt

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Posted 22 July 2013 - 09:13 PM

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



#31 Joelf

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Posted 22 July 2013 - 10:40 PM

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,


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#32 mimi g

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Posted 23 July 2013 - 05:36 AM

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?



#33 Joelf

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Posted 23 July 2013 - 11:01 AM

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,


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#34 mimi g

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Posted 23 July 2013 - 12:40 PM

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!



#35 Amanda Thorpe

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Posted 24 July 2013 - 12:07 AM

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.


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#36 Shelley Ensz

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Posted 24 July 2013 - 12:12 PM

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
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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.

#37 Hellene

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Posted 08 August 2014 - 02:01 AM

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



#38 Amanda Thorpe

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Posted 10 August 2014 - 01:05 PM

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.


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#39 Joelf

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Posted 11 August 2014 - 10:31 AM

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,


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