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Very Confused


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#1 Jessica

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Posted 11 April 2007 - 07:16 AM

Hi, I'm am currently 26 years old and have had random joint pain for the past several years. Last year my doctor ran blood work and everything came back negative. So, just last week I have more blood work and I tested positive on the ANA and Scl-70. So, does this mean I have scleroderma even though my only symptom is joint pain? Is joint the first stage of scleroderma. I'm really worried.

#2 Sam

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Posted 11 April 2007 - 07:59 AM

Jessica, I had raynauds as my first symtpom of having scleroderma. But at that time they did not know if I was going to have scleroderma or Lupus. For many years I had joint pain. Sam
Sam

#3 Heidi

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Posted 11 April 2007 - 09:15 AM

Hi Jessica,

Welcome to the forums. I am glad you found us, but sorry it is because of your joint pain and positive ANA. No, just because you have a positive ANA and SCL-70 does not mean you have scleroderma. The positive blood test is just one piece of the total picture that a rheumatologist would consider in making the diagnosis. IN fact, for many rheumatologists clinical symptoms are far more important than the blood test. Are you seeing a rheumatologist? If not, you should see one based on the positive blood work so that he/she can begin to monitor you in case other symptoms should start to appear and to address your joint pain.

Warm wishes,
Heidi

#4 peanut

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Posted 11 April 2007 - 10:50 AM

Jessica,
My rheumatologist said pretty much what Heidi said... blood work + symptoms/doc’s observation + other tests (CAT scans, x-rays, biopsy, PFT...) I was diagnosed through x-ray, CAT scan & blood work. It would be a good idea to be on the look out for symptoms like fatigue, tight skin, coughing… and don't be afraid to mention things to your doctor. Don't be worried, just be aware of your body - what's normal and what's not and communicate lots with your doctor.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#5 janey

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Posted 11 April 2007 - 05:11 PM

Jessica,
Welcome Darlin'. Glad to see you posting and getting information. I agree with Heidi and peanut that positive bloodwork does not mean that you have scleroderma. I have a positive ANA but negative scl-70, so bloodwork is not always a sure thing but rather an indication of what the doctor might looked for. If you're not seeing a rheumatologist, you should. They specialize in autoimmune disorders which are indicated with a positive ANA. That's what sent me to one. The rheumatologist used my symptoms to make the diagnosis. My first symptom was a swollen and painful left knee, and 2 years later I started getting a painful left hip, but that's it for joint pain. There are so very many things that could cause joint pain so I wouldn't worry about sclero right now. Please see a rheumatologist and get a throrough checkup.

Please let us know how you are doing and how the doctor appointments go.

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#6 ErinF

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Posted 12 April 2007 - 03:20 AM

Hi Jessica,
I've been in the exact same position as you for the last several weeks, and posted almost the same message here on these boards when I first learned about the antibodies. I saw my doctor for a wide variety of symptoms and my ANA and Scl 70 came back positive as well, but I just saw a Scleroderma expert who says I do not have scleroderma. He told me that Scl 70, despite what we read on the internet, can and does show up in other autoimmune diseases (and it turns out I may have a few of them), and sometimes shows up when there's absolutely nothing wrong at all. Do you have a family history of autoimmune diseases? If so, that could also explain it. So it's not at all a guarantee! But, as the very wise ladies have already posted, it wouldn't hurt to visit a rheumatologist and get yourself checked out from head to toe in order to find out what's going on in your body. And not just for peace of mind--if you do (and that's a big if) have an autoimmune disease it sounds like you're early or progressing slowly and that's fabulous news! There are so many things available to help out and keep you as healthy as possible.

Good luck and stay positive and keep posting--everyone here gives the best support!

ErinF

#7 Jessica

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Posted 12 April 2007 - 04:41 AM

Wow! I appreciate all of your messages. It is helping me feel much better. I do have a doctor but right now she is on vacation. So, her office gave me my results and after researching everything I started to really stress out thinking that I have some really serious. I guess I should wait and see what she says when she gets back on Monday. I am lucky that I don't have any other symptoms! I will keep everyone posted and I really appreciate all your support and messages!!!

#8 Sweet

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Posted 12 April 2007 - 06:02 AM

Hi Jessica,

Joint pain is one of the biggest symptoms of Sclero. Have you seen a rheumatologist? If not I would highly recommend it. Most diagnoses are made by symptoms suffered by the patient and blood test etc. But every case is different and you need to see a doctor that specializes in this disease that can help you through the process.

When I was diagnosed it was due to severe joint pain and then I had a positive ANA. Over the next couple of years more and more symptoms arose and it became even more apparent that we were on the right track.

Best to you.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 Jessica

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Posted 12 April 2007 - 09:17 AM

Yes, I am seeing a rheumatologist, however she is on vacation right now. Her office gave me the results which was probably a bad idea since it is causing me to worry. How long did you have joint pain for? I have had it for 2 years now and it has not progressed at all, meaning it has stayed the same. Some months I have it, others I don't. It is really strange b/c I only get joint pain at night and when I wake up in the morning it is gone. I have had a MRI and a bone scan and it doesn't show inflammation or bone or joint damage which is great! Does this mean whatever I have it is progressing slowly? So, I could possible develope other symptoms along the way?

#10 Sweet

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Posted 12 April 2007 - 09:41 AM

Hi Jessica,

I still have joint pain. I live with pain everyday and take meds to try and live somewhat of a normal life. Each day is different for me, sometimes hour to hour things change. I'm not saying by any means that you will or will not have other symptoms eventually, but that possibility is always out there. With many auto immune diseases it can take years for the whole picture to unfold in order to get a proper diagnosis. Until then the doctors just do the best with what they see in you and in your tests.

Each patient is different, some will progress quickly and others manage to stay at almost a stand still for years! Which is great news! Just take one day at a time, make sure you leave no rock unturned and keep asking questions. :)
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#11 nan

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Posted 12 April 2007 - 02:51 PM

Jessica,
I hope that you will be able to get some answers when your rheumatologist gets back. I have had joint pain for years. I have scleroderma, sjogren's, and fibromyalgia. I am also very fatigued and have sore hands and feet. I also have watermelon stomach(lesions in the stomach that can bleed and cause anemia- it's very rare,but can occur with scleroderma). Sweet is right, scleroderma affects each person in different ways. Take care!
Nan