Could abnormal blood work be wrong?

This week I had a friend disclose that she was told by her family Dr she had Scleroderma but was later informed by the same Dr that she was misdiagnosed and had fibromyalgia instead. I hear this and I'm thinking, "so could this happen to me?". The misdiagnosis was based on her symptoms. She didn't say much regarding her lab work. I had a abnormal ANA 9 years ago without symptoms. Now I have several symptoms and my labs reveal an abnormal ANA that revealed a positive reflex for Scleroderma Type B (Crest) ????? Have no clue exactly what all the labs meant. I'm not scheduled to see the rheum until February. Just wondering if it would be possible to not have scleroderma although my bloodwork showed otherwise.....thoughts?????

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A doctor would need blood tests and symptoms to positively diagnose scleroderma.

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I'm not for sure if she had the positive blood work or not. Guess I'm just wondering if there could be a chance I (or anyone else) could be misdiagnosed correctly and yet have the abnormal bloodwork. Seems like that would be saying your positive strep test is really not positive you have the flu instead. I know I'm overanalyzing...I apologize. I just don't understand all of this, and have been told for the past year by my doctor I was just "depressed". Then when I heard this, I thought, "could it be discarded that quickly by physicians, despite abnormal bloodwork?. I have so many questions about all of this I could just cry :O(

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I'm not sure what you are asking exactly since the phrase "misdiagnosed correctly" kinda sends me in the wrong direction.

But people do have positive ANA results and do not develop the symptoms that lead to a scleroderma diagnosis.

As MaggiMay says, a diagnosis of scleroderma must depend on both symptoms and bloodwork, with probably greater weight on symptoms. So you gotta have the sclero symptoms.

Does that help answer your questions?

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Absolutely. Sorry for the confusing words--I meant to say to misdiagnose "correctly" as if by a physician or health care provider who could say you no longer had scleroderma but rather some other diagnosis despite the blood test results AND symptoms.

I have both abnormal bloodwork and symptoms, I'm just wondering if anyone has ever seen that a Dr states its something else rather than scleroderma after he has already said everything was positive for sclero. Is this rare? Wish I knew how accurate the labs were!

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momfor3, I am in a similar boat as you. Don't quite understand why with pos. lab tests and many sclero symptoms the docs aren't more concerned. Seems to me that this indicates, at the very least, a need for further testing to eliminate other autoimmune illnesses and focus in on exactly what I do have. I feel just as confused, frustrated and scared as you do. Thank heavens for this board!!

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Diagnosing scleroderma involves judgment and expertise -- it's much more than seeing a positive test result and saying "yes, you have scleroderma." Sometimes (often!) doctors can disagree about a diagnosis even when they're looking at the same data. And lab errors do happen. Your body can change over time, too. So can the criteria for making a diagnosis.

Finding the most accurate diagnosis is a process of refinement. My diagnosis has gone from "chronic fatigue syndrome" to "undifferentiated connective tissue disease" to "scleroderma" to "scleroderma with Sjogren's overlap," or maybe "mixed connective tissue disease?" -- it's a moving target. That's why it's so essential to have a doctor you trust.

To eliminate concern about possible lab errors, ask your doctor to repeat that blood test. And ask what lab they prefer; different labs have different procedures.

I haven't heard of anyone having been diagnosed with scleroderma, and then the diagnosis being changed to something completely different. It's quite common, though, to have other diagnoses added as things develop. Doctors seem to be quite hesitant to label anyone with a specific diagnosis of "scleroderma" unless they're pretty sure it's really there. The best thing is to ask your doctor: "How sure are you about that diagnosis? Does it seem obvious, or is there anything that makes you uncertain about it? Does it account for all my symptoms, or should we be looking for something else?"

Thinking about your question has made me realize that there are some diagnoses that doctors seem to hand out to anyone who walks in the door -- like fibromyalgia, or depression, or migraine -- and others, like scleroderma, that you have to fight for. I wonder why that is?

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I'm sad to say this, but I have to admit that scleroderma is not well understood by many doctors. So, the short answer to your question is YES. It is possible to have false positive or false negative labs. And, like everyone is saying, the good doctors put your labs and symptoms together to make a diagnosis.

Here's the long answer, told by way of personal anecdote (not the most accurate way to prove much of anything).

Briefly, two personal experiences after my diagnosis. One, I was sent to a dermatologist by my rheummy the day after my diagnosis for assistance with one issue. He said I did not have scleroderma because my skin was not thin and shiny (a late complication). My rheummy sent him a letter, and he then contacted me to try to make nice. At least he was educated by the experience. Second, I went to a high level specialty center and described my symptoms, which included some waxing and waning of the symptoms. The doctor said, "I don't know about California, but here in .... that's not how scleroderma behaves." I was genuinely thrilled! I said, "Oh, that's great! I don't have scleroderma??" And this guy I paid thousands to see basically said, "No, you have scleroderma, but you're wrong about your symptoms sometimes waning." REALLY? I won't go on--I think we all have seen and read enough here. :)

I have found a medical team which includes wonderful doctors here in California and a specialist in Chicago, as well. This group listens to me, is compassionate, is very knowledgeable and is very helpful to me. It's been a journey to get here. You will need to take this journey, as well, whether you have scleroderma, fibromyalgia, depression, or some other issue. Find a doctor who is knowledgeable and really listens to you and stick with her/ him. That doctor will need to put your personal puzzle together, with all of your symptoms and your labs and your family history and even your emotional stuff. And, sometimes you even need to throw a little tincture of time into the mix, to see how things move and change over time. Use the Scleroderma Foundation as a resource, be your own advocate, learn as much as you can but YOU ALSO need to be ready to listen to alternative explanations. These autoimmune diseases in particular have a lot of cross-over between them.

Good luck on your journey, friend. :)

KFS

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Excellent responses. I have also never heard of anyone diagnosed with scleroderma who had the diagnosis revoked. What I have heard lots of times is people diagnosed with other diseases who were later told that they actually had scleroderma instead and that the initial diagnosis was wrong. In other cases, the diagnosis of something else (lupus, fibromyalgia, MS, depression, Lyme Disease) is correct but the person eventually also turns out to have scleroderma and it takes an excessively long time to reach the sclero diagnosis because the symptoms are wrongly attributed to other co-existing diseases.

As the previous posters have mentioned, you can have overlap syndromes. Many of us have at one time been diagnosed with Undifferentiated Connective Tissue Disease or Mixed Connective Tissue Disease. UCTD can later develop into a specific CTD or can stay undifferentiated forever. It is very difficult to make a good diagnosis unless the symptoms develop in a very clear and characteristic way, and it certainly helps to have abnormal blood work to confirm the diagnosis. Blood work is *not* necessary to make a diagnosis though.

There are people who have a positive ANA and/or Scl-70 and/or anti-centromere antibody and who do not meet the criteria for a diagnosis of scleroderma. There are people with these antibodies who will never develop the disease, and there are others who will develop a very mild form. Then again, there are people with all the symptoms of scleroderma (tight skin, lung fibrosis, and so on) who have never tested positive for the antibodies or occasionally have never tested positive for ANA.

I don't know if any of this is helpful. I think the most important thing to keep in mind is that your doctor should be treating your symptoms. There are very specific guidelines for a diagnosis of scleroderma which you may or may not ever meet, but this should not stop you from getting good medical care from a rheumatologist, dermatologist, or whichever other specialist is appropriate. If you want to read the diagnostic criteria, search on this site or on the internet for "ACR criteria diagnosis scleroderma" and then also search for "Leroy Medsger diagnostic criteria scleroderma". There are 2 different sets of guidelines: most rheumatologists seem to use the ACR criteria, but some use those developed by Drs. Leroy and Medsger. The latter were designed to catch more cases of early or mild scleroderma so they are a bit broader and include things such as antibodies, nailfold abnormalities, and Raynaud's. There is less emphasis on skin thickening and tightening which acknowledges that it is possible to have scleroderma and its complications without necessarily having any skin involvement or only mild involvement.

Take care,

Zoe

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Your responses are so helpful! I feel the same, I've noted that several people with AI disorders often have different diagnosis or will fluctuate between two or more diagnosis per their doctors.

As for the doctors easily throwing out the "depression" or fibromyalgia diagnosis, maybe it's a safe zone for them when they are unsure and not prepared to further study. My doctor did the same thing...depression, over and over. Despite the Raynauds, temperatures at 100, depleted energy levels, "lets try Zoloft, lets try Prozac, lets max your Prozac...". When he suggested Ritalin, I sat with my mouth open.

I'm so relieved and grateful for all of your advice, suggestions, and resources. I pray that I can find a great specialist that will listen and take the time to care---I miss my mama time with my girls. I'm tired of my bed getting the most time with me!

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I had a positive ana blood test and was told by the rhuemy i went and saw he could tell it was a false positive by looking at me and gave me a diagnosis of fibro. I have an appt with my primary tom where i'm going to ask for a second blood test and a referal to a different rhuemy.

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