Posted 14 January 2009 - 09:32 AM
As you all know I have sclero, well my best friend tested positive for sclero antibodies her numbers were 254 and her doctor said it does not mean you have it, is this true, but she is sending her to a see a rheumatologist.
Posted 14 January 2009 - 11:49 AM
I am sorry I don't have an answer for you but I do have some questions. First of all, does your friend have any of the symptoms? Next, I am not sure what the number 254 mean. My sister was diagnosed in early December so I am new to all of this. She is in her early 50's. I am 38 and have a little concern that I, too, could someday have scleroderma. I have no symptoms at this point but naturally it is on my mind. I wonder if you can have antibodies without having any symptoms. Good luck to both you and your friend as well. It is known as a dirty word in our family.
Posted 14 January 2009 - 12:14 PM
Not sure which antibodies you are referring to ANA anticentromere (?) but suspecting you might mean SCL-70 (?). If anticentromere, then the normal is 1:40...I don't know how to read the SCL-70 but someone here undoubtedly will. I understand that you also need to have active/clinical symptoms (for example, 2 of the 5 symptoms in CREST plus the positive bloodwork for a Systemic Scleroderma Limited/CREST diagnosis...that bloodwork alone is definitely not enough for a diagnosis in that case). I believe if it shows in your blood, then they have an idea of what to look for if you ever get sick down the road. Should always see a rheumatologist if your bloodwork is off because that's what they specialize in...so that's a good thing no matter what. Keep us posted.
Posted 14 January 2009 - 12:20 PM
Yes, you can have antibodies without having clinical symptoms active enough for a scleroderma diagnosis....and you can stay that way forever or it can evolve...some people are actually mildly affected...absolutely no way of knowing which way it will go until it happens though, or doesn't....I know it sounds really strange but it's true.
Posted 14 January 2009 - 12:29 PM
As with any test you can have false positives and false negatives. This seems to be especially true for antibody tests. There have been recent studies where different methods of identifying antibodies yield different results.
I'm certainly no doctor, but in the various research about autoimmune antibodies, there always seems to be the "small print" that says you can test positive, but not have the disease or test negative and have it. I have always tested negative for scleroderma antibodies, but I do have scleroderma. My diagnosis was based on my symptoms. So go figure.
Since your friend did test positive, it is a good idea for her to seek further evaluation, just to make sure. Please let us know what she finds out.
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Posted 15 January 2009 - 04:58 AM
I did have a high ANA, but negative on the SCL-70. What got me diagnosed was (starting small):
nail fold capillary dropout
extremely high score on 24-hr PH test, several times higher than normal demonstrating severe GERD
HRCT showing ILD, esophageal problems
Bubble echo and RH catheterization demonstrating PH
A history of aches and pains, swelling in hands and feet, and some tendonitis.
Janey is right - it's the cluster or constellation of symptoms that did it. A good rheumatologist will look at all that.
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Posted 22 January 2009 - 08:54 AM
Hi Jeannie and everyone,
Reading your post here, it looks like you were able to have a doctor put together the puzzle to come up with a diagnosis. Did the whole process take much time?
I've been searching for answers and I've been told on numerous occasions that I am going about my search for answers wrong. I have many symptoms and I've gone through many tests. The doctors I'm able to see are not scleroderma specialists, I'm working on trying to get a referral at some point.
I've suspected scleroderma for about 3 years. I have positive ANA, I've been told it isn't high by my doctors, and I've been told by a person in a scleroderma support group that a positive is a positive for something immunological.
I've been found to have abnormal swallow patterns of peristalsis, and absence of peristalsis in a swallows less than 30 seconds apart. The Lower esophageal sphincter is okay, and I wasn't found to have GERD. I still have inflammation of the esophagus. The first GI doctor said I had GERD without the Ph test.
I have nailfold capillary dilation and a little drop-out, but they aren't tortuous and folded. I have Raynaud's, dry eye, burning mouth, swollen hands in the morning. I see facial changes even though they aren't very noticeable to others. Radial furrowing, narrower nose, shiny tight skin on my forehead (even when it isn't oily). Some exhaustion. Elevated blood pressure.
Anyway, I'm not asking you for a diagnosis, just your opinion(s) on whether this is remotely like your struggle to get a diagnosis.
I've wondered if I should just forget the whole thing and just quit seeking medical answers. People around me and the doctors in my HMO are quick to say I don't have scleroderma. I can't seem to get over the fact that things don't feel right, and I'm extremely bothered by my swallowing troubles, burning mouth, and the possibilities. I'm going to work through the swallowing issues with my current GI. If this doesn't end up going on, do I keep going in for answers?
Thanks for reading this long post.
Posted 22 January 2009 - 10:05 AM
As it happens, it takes an average of 6 years for women to be diagnosed with scleroderma (3 years for men, with the same symptoms). And you know how averages work -- so that means some are diagnosed in the first year while others wait 12 years, for the same diagnosis.
You would think it would make sense that being knowledgeable about the disease would hurry things along with the diagnosis, wouldn't you? But sometimes that even backfires because the doctors rush to reassure that you don't have scleroderma -- often, even when they don't know the full symptom checklist!
Usually, I think all they recall about scleroderma (if anything) is the classic hands-frozen-into-claws from the medical textbooks. But that happens very late in the disease, for most people -- if ever.
Sometimes it speeds up the diagnosis to see a scleroderma expert, however, even some of them will observe for a few years before committing to the diagnosis, even in patients with what (to you and me) would be rather obvious symptoms.
The important thing is that you go to the doctor and seek treatment for any symptoms that arise. You can safely tell people you have "arthritis", and scleroderma is just one form of arthritis. For more information plus dozens of patient stories on the topic, please see our page on Difficult Diagnosis.
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Posted 22 January 2009 - 11:49 AM
First let me start by saying I can understand your frustration (as well as I think everyone else on this site!).
Many of us have been sick for years, and many have never been given any answers (or complete answers). My own personal experience started about five years ago now, and I've finally started to get some answers. I found many symptoms emerged first, long before my bloodwork started to show "positives" for antibodies.
My bloodwork showed reactive/positive for AMA (anti-mitochondrial antibodies, liver specific) first back in 2007 after several tests I had done to try to figure out my severe GI issues, then several months later, I finally showed a positive ANA. Recently my bloodwork shows positive antibodies for SCL 70. I would also say to be forewarned as many people have inaccurate results when antibodies are tested. Two of my doctors explained I should have had a positive ANA way back when I showed I had a positive AMA (as a positive ANA test shows in general you may have antibodies possibly indicating autoimmune issues, where AMA antibodies are more disease specific, just as SCL 70 is more disease specific).
I've been diagnosed with PBC (Primary Biliary Cirrhosis), Systemic Lupus, and now potentially Scleroderma (will see a Sclero Specialist Feb 4th). My symptoms all overlap each other, and I think it's very difficult for Doctors to determine which symptom is from what problem, at least treatment for all these things are similar.
Physically, the fatigue, muscle and joint aches and pains, finger swelling and stiffness, "red spots" on my skin and tongue, GERD issues, digestive and bowel issues, etc., have been going on since at least 2004.
I thought sharing this might be helpful. It's been a long journey for many, and a continual one for many as well.
Thinking of you, and wishing you well.