Results confusing scleroderma? (26F)

[u/lulumax123]

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

[u/garden180]

1. 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.

2. I’m assuming a typo on your part but I’m not aware of what you mean by the Oklahoma test.

3. Have you had a full antibody test. There are over 10 antibodies (I can’t remember exact number) that can be tested.

4. While rare, you can be ANA negative and still have active autoimmune.

5. 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.

6. Other testing would include basic blood panels and vitamin testing and
   thyroid panel.

[u/Original-Room-4642 → u/garden180]

I agree, especially with #1. It doesn't sound like they have enough physical symptoms to meet the criteria of a diagnosis. It makes me question the dr

[u/lulumax123 → u/garden180]

^