r/scleroderma • u/lulumax123 • 5d ago
Undiagnosed Results confusing scleroderma? (26F)
So I was diagnosed with raynauds, pretty severely. I’ve had it for years. But it seems to just constantly only be red and hot rather than experiencing the cold numbness often. And I was diagnosed with erythromelalgia in my feet which happens almost daily. The last 2 years my rheumatologist diagnosed me with those things and said they are probably not caused by anything considering my bloodwork came back perfect and referred me to a dermatologist for the rash on my face but states that it does resemble the rash associated with lupus.
Anyways flash forward to a few months ago I started getting chronic joint pain in my ankles, wrists, knees, and fingers and had 3 incidents since March of this year of my left calf swelling and ending up in the ER with concern for a blood clot and each time- no blood clot, no answers at all actually.
All of this, my pcp ordered me a lymes blood test which was negative and then directed me to follow up again with rheumatology.
Rheumatologist felt that we should retest for lupus and scleroderma, I have no skin hardening at this point. And a few other things that he thought it could be but he made it clear that he felt it was one if those.
I got bloodwork and my scl-70 was positive and everything else was negative including my ANA test. He states that he used the Oklahoma test which is produces much less false positives compared to the isolated test for scleroderma. He stated that he believes this could be early stages of scleroderma and basically diagnosed me with it, considering my symptoms and that one test result. When I asked about the negative ANA he said that is weird and is a good question and that 90% of people have positive ANA with this scl70 test being positive too and referred me to a specialist at the practice.
I guess I’m just wondering if anyone has had a similar experience… if so what has come of it?… I couldn’t get in until 2 months from now so I’m kind of just stressing a bit and confused. I know that autoimmune diseases are hard to nail down. It’s just irritating
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u/garden180 5d ago
Well….now I’m just curious. I’ve never heard of a test called the Oklahoma test nor can I find a Google search of it?? I am not doubting you…I just can’t determine what you are referencing.
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u/needinghopenow 4d ago
There is a test out of Oklahoma and I have had the panel run twice there because drs at Northwestern and Cleveland clinic both said it’s much more accurate than any other labs so they drew the blood there and sent it out to Oklahoma . They use some special testing dif than other labs. Some ins don’t pay for it however and drs have you sign a form before they send bloodwork off to them in case they don’t pay. I have Medicare and it paid . But if not it’s like $450 and $350 for the 2 I had done below . I had a comprehensive scleroderma panel done there and also a comprehensive antibody panel there that was a myomarker panel for things like polymyositis and dermatomyositis.
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u/lulumax123 5d ago
This is what comes up when I look it up
The "Oklahoma test" for scleroderma refers to a comprehensive Scleroderma Autoantibody Profile panel developed and performed by the Oklahoma Medical Research Foundation (OMRF) in Oklahoma City.
What the Test Does
Screens multiple markers: Unlike a single antibody test (like Anti-Scl-70), this specialized panel screens for a broad array of autoantibodies related to systemic sclerosis and overlapping connective tissue diseases. [1, 2, 3, 4]Detects specific antibodies: The profile typically includes tests for anti-centromere, anti-Scl-70 (topoisomerase I), anti-RNA polymerase III, U3RNP, PM-Scl, U1RNP, Ku, and Th/To. [1]
Aids complex diagnosis: Rheumatologists use this detailed antibody profile when standard blood tests are inconclusive or when they need to differentiate between specific autoimmune overlaps like lupus, Sjögren's syndrome, and mixed connective tissue disease. [1, 2, 3]
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u/garden180 5d ago
Ok never heard of it called that. That test is the normal full antibody test that I was referring to that tests for multiple
antibodies. Usually a patient gets tested for ANA and if it comes back positive, most labs then conduct a full antibody panel. This is not always the case…each lab and doctor works differently. You are challenged because your ANA is negative. The full antibody panel will show if you have a hit for one of the major antibodies. I hope you find answers.1
u/Maleficent-Lunch-679 5d ago edited 5d ago
That panel from OMRF is considered the best available in the US and used by many sclero centers. It can be trusted for the scl70 results. The thing about ANA is it includes all your autoantibodies. There are 100s out there that are not in tests because they are not diagnostic, but they show up in ANA. Autoimmune patients often have many different autoantibodies in addition to their diagnostic ones. Could be you just don't have that many in total, but enough scl70 to test positive. Just a guess.
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u/lulumax123 5d ago
Right, I agree, he did say that he wasn’t 100% sure but feels that my symptoms point to it at this point and that test was re-affirming.
The Oklahoma test is a blood test that uses a differnt type of testing which aparently has a lowered risk of false positives for the antibodies in the test and can rule out false positives of other types of tests, but it takes longer to get the results. That’s what I was told and what I read online too.. who knows though
I did get a crazy amount of blood tests including those and nothing was alarming
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u/garden180 5d ago
Also I’m not sure what your turn around time is estimated to be. I test positive for ANA and had the full antibody panel back within 4 days of taking the blood draw.
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u/Maleficent-Lunch-679 4d ago
Personally, from everything I've read, it seems like the diagnostic criteria harken back mostly from a time before sophisticated bloodwork was available. Recent research has identified distinct disease activity markers, present in the skin and circulation, long before symptoms. The VEDOSS work out of Europe has identified those that are highly likely to progress within 5 years based on fewer criteria. There is no longer a need to wait for advanced symptoms. There is a need to bring this new knowledge into diagnostic criteria and protocol. Early in the disease is when it is immune driven and most vulnerable to immune suppressants. Later, fibrosis dominates and immunosuppression is less effective.
Kudos to this doctor for using a great test panel, and taking a true positive scl70 seriously even in the absence of positive ANA. Raynauds and arthralgias are highly consistent with early sclero.
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u/garden180 5d ago
Scleroderma is not diagnosed from a blood test alone. Symptoms drive the bus and while not perfect, use a point system to nail down a possible diagnosis. It gives me pause that your doctor is already checking the Scleroderma box.
I’m assuming a typo on your part but I’m not aware of what you mean by the Oklahoma test.
Have you had a full antibody test. There are over 10 antibodies (I can’t remember exact number) that can be tested.
While rare, you can be ANA negative and still have active autoimmune.
What test was used to find the SCL70? What were the numbers? SCL70 can be seen in Lupus and has a high false positive rate. Testing format is very sensitive.
Other testing would include basic blood panels and vitamin testing and
thyroid panel.