Elizabeth28

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

39 posts in this topic

Hello Jeff and welcome to the Forums. So glad you found us and started asking questions right away before getting all freaked out about things.

 

Here is our page on Vitamin D Deficiency, Sunshine, and Scleroderma. Hopefully it will fill you in. In the meantime, browse around and get to know us. Hopefully others will be able to shed some light on your other concerns.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Welcome to Sclero Forums, Jeff!

 

It's really hard to say what's up with the Scl-70, isn't it? Have you thought of asking your doctor why they ran an Scl-70 on you, if you didn't seem to have numerous or significant symptoms of scleroderma?

 

I'd be curious as to whether or not your doctor is noticing some signs or symptoms that you are not. I've been very surprised in reading over my medical records how many items were noted by doctors but never even mentioned to me, including things like periungual erythema, livedo reticularis, etc.

 

In any event, I hope it all turns out to be lab error and you are set free and clear of any concerns regarding scleroderma. Please let us know how it turns out, either way.


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.

Share this post


Link to post
Share on other sites

Thanks for your responses!

 

I wanted to quickly answer Shelley's question regarding why the test was run. As I mentioned, I was diagnosed with fibromyalgia some time ago and some of my main symptoms are fatigue and a burning sensation throughout my body. I also rarely have a feeling of weakness, which has been going on for 10 years. I believe some of that had to do with the test being run. However, the most recent trigger was some irregular results in an EMG. I have some nerve damage in half of one of my arms not attributed to a pinched nerve. The neurologist seemed fairly confused about the cause, and ordered a bunch of blood tests at that time. I guess this was one of them. I am not really sure if there is a direct link between the nerve issues and scleroderma. I don't appear to have any of the other symptoms I've read about, aside from GERD.

 

I'm with you - I hope the test was a fluke. I have enough other chronic illnesses to deal with at this point.

 

Thanks,

Jeff

Share this post


Link to post
Share on other sites

Hi Elizabeth,

 

I am so sorry that you are going through this. So much worry and anxiety seems to accompany these conditions, doesn't it?

 

I seem to be opposite of you in that I tested negative for Scl-70 and my ANA is normal but I have sclerodactyly (skin tightening on hands and feet) and morphea (non-raised red rash) on my legs. It seems to affect everyone so differently that one may think we are talking about different conditions.

 

I wish you luck in your journey.

 

Mona

Share this post


Link to post
Share on other sites

Elizabeth,

 

I came on this site because I saw your post. I too tested positive for scl-70 autoantibodies, but do not have symptoms. About a year ago I developed iritis and my doctor ran some tests to see if it was related to an autoimmune disease. My ANA was positive, as was scl-70. I went to a rheumatologist who did more tests and he said that I did not have scleroderma. He also said that he has seen quite a few people in the last few years who, like us, get a positive scl-70 but do not have scleroderma. Like you, I am still concerned and I notice every little skin change or joint pain. I had Guillain Barre Syndrome, which is also considered an autoimmune disease, over 30 years ago and I have neurological problems related to that. I had a doctor tell me recently that the autoantibodies are still not totally understood and that I shouldn't worry about it, but I do.

 

Take Care

Share this post


Link to post
Share on other sites

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

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

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)

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now