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Biomarker for Diffuse Scleroderma skin has been discovered!


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Well, am I? (Scleroderma)


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#1 JustAsking

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Posted 23 March 2016 - 07:51 AM

Hi, everybody.  I am new and would like to know opinions on whether this is a serious indicator, and what else I need to look at, if anything.

 

My SCL-40 tests came back at 1.

 

I saw another related thread that asked about ANA and Anti-DNA Ab Qn was at 1, RNP and Smith is at less than 0.2.

 

As far as symptoms, I am experiencing fingers locking, pelvical joint stiffness and low bone density.

I am a male in late 30's.

 

However, please keep in mind that as a former Cushing's disease patient and type 1 diabetic, I have/have had a bunch of other things happen that messed/mess with my hormones and are also likely to be an underlying reason.  For example, the fingers started to lock right after Cushing's ended.

 

Anyway:  should I take seriously?  Do I ask for a retest or head to the doctor?  Does the borderline thing mean that I am ok for now or is anything above 1.0 reason to conclude I have it?  Last, but not least, I have had many tests taken, so if you want to ask about any other bloodwork, please let me know.

 

YK

 



#2 Shelley Ensz

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Posted 23 March 2016 - 10:07 AM

Hi JustAsking,

 

Welcome to Sclero Forums. Since lab test analysis varies, it is important to check what your lab report says, and what your doctor says the test result means, in light of your symptoms.

 

This is important because it is possible to have antibodies without associated illness, and it is possible to have illness without antibodies. Generally speaking, it is the symptoms that rule the day when it comes to a scleroderma diagnosis.

 

We are not doctors, so we cannot diagnose nor rule things out. However we do have some good resources on Scleroderma Diagnosis, including videos and symptom check lists. Scleroderma is far more common in females. In men, it usually occurs due to occupational exposures (such as construction workers, miners, or firefighters.)

 

I'm not a doctor (in fact, I have no medical training at all).  Lab ranges vary for every test, laboratory, and method that was used, so reference ranges for other tests are useless. The only range that matters is the one that is given by your laboratory. So, if they list it as Negative, it's negative, and if they list it as Positive, it's positive.  Even then, doctors sometimes decide that the test result isn't helpful if it doesn't correlate with the symptom pattern.

 

The most telling symptoms for scleroderma are generally Raynaud's, tight skin, and pulmonary fibrosis; it's often more of a constellation of symptoms that leads to diagnosis, unless there is one very prominent symptom early on, like unmistakable tight skin.

 

As it happens, Cushings can cause osteoporosis (low bone density) and vertebral compression (back pain and stiffness). I don't know if it can cause tenosynovitis (trigger finger) or not, but many things can, including repetitive use and many other forms of arthritis, too.

 

:hug-group:


Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
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The most important thing in the world to know about scleroderma is sclero.org.

#3 Joelf

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Posted 24 March 2016 - 10:38 AM

Hi JustAsking,

 

Welcome to these forums!

 

I can understand how worrying it is to have positive blood tests, particularly with the thought of a complex disease like scleroderma. However, as Shelley has advised, it is possible to have positive blood tests for scleroderma and yet never go on to develop the full blown disease and vice versa. In fact, if you use our search facility at the top right hand side of the screen, you'll find that we do have numerous threads on this very subject.

 

The symptoms you describe could equally relate to many health problems, particularly as you have experienced diverse symptoms in the past and so I would suggest that if you are very concerned, then it would be a good idea to go back to your doctor, perhaps with a view to consulting a listed scleroderma expert, as it is very difficult for the average rheumatologist to correctly diagnose this complicated disease. It is important for your doctor/rheumatologist to have a complete picture of all the symptoms you describe, along with your medical history, in order to arrive at a diagnosis and even then, because it has so many idiosyncrasies, reaching a satisfactory diagnosis can be lengthy and frustrating.

 

Kind regards,


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#4 quiltfairy

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Posted 24 March 2016 - 04:31 PM

I was wondering what you were talking about when you stated you had a SCL-40 test as that was a test that was given to my poodle lately to try and find out what was wrong with him as dogs also have autoimmune disease. I think the test you are trying to say is the SCL-70 antibodies test. If a doctor told you he was doing a SCL-40 test, I would find a new doctor.

Bless you, I will be thinking good thoughts for you.



#5 Kathy D

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Posted 24 March 2016 - 04:42 PM

I have not heard of SCL-40 before, what is it?


Diffuse Scleroderma Diagnosed March 2009

#6 Joelf

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Posted 24 March 2016 - 08:55 PM

Hi Justasking,

I think it's possible that both Quiltfairy and Kathy are correct and that you are talking about the SCL-70 antibody, not SCL-40.

I've included a link to our page on Antibodies in Systemic Scleroderma to give you some more information, but I would reiterate that having positive antibodies is only a small part of the diagnostic process and that a scleroderma expert should take into account all the clinical symptoms you're experiencing, as well.

Kind regards,

Jo Frowde
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#7 quiltfairy

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Posted 25 March 2016 - 03:38 PM

I am not sure what the SCL-40 test was all about, I just read it on the bill that the vet gave to me.

All and all in the end my poor Tony, a shee-poo (dog), was diagnosed with cancer. He is doing good at this point; he is on pain meds, but has slowed down a lot. One of my big reasons for quitting smoking is I gave my poor Tony lung cancer and if he makes it to June he will be 16 years young, so for people that smoke don't do it near your pets.

I will be thinking about each of you and bless you all.