Did they do lupus anticoagulant (LA) or anti-beta2 glycoprotein 1 (a(beta)2GPI) with those antibody tests? It sounds likely that those will have been covered in the workup described. If so then its unlikely to be anti phospholipid syndrome, at least from initial workup. Given the description of symptoms there is still a possibility of antibodies to other things such as anti prothrombin, anti-annexin, anti-phosphatidylserine, etc, but the clinical correlation is weak at this time and testing is not routinely performed since there is much uncertainty about their significance. It may be something a rheumatologist could speak to in more detail.One of the key criteria with testing though is that testing should occur within a short period of time from any event such as blood clots or miscarriage if I remember correctly. If it is not done within a short period of time it may not show up on testing (I dont routinely deal with APS so I dont know the timing recommendations). I could not say if the current cutaneous and vascular manifestations would be included, but a rheumatologist may be able advise further.I do agree it is worth another follow up and discussion with a rheumatologist again to discuss the possibility of the diagnoses in this thread, multiple good differentials on the list from other physicians as well. It sounds like youve already had an extensive workup, but at the end of the day if you have a progressive pathology and no answers, you have to keep searching and discussing it. Best of luck.
No biopsy due to concerns about infection/wound not healing with the blood flow issues.You're right, I have no idea if they truly ruled out all autoimmune diseases. But I did have significant testing for it. The main hospital did all their own testing and when I was negative for everything, the doctor worked with Mayo Clinic and used their full autoimmune testing panel or whatever and was still negative for everything.I do remember some reasons coming up: no inflammation markers, negative ANA multiple times, 3 rheumatologists cleared me and told me it was vascular not rheumatological in origin. I was tested for and all the types of vasculitis (without biopsy just blood work).And these are some of the reasons I can remember for saying no to Buerger's:- My symptoms only come on in the dependent position and at no other time, all their tests showed no blockages or clogging or weird patterns of veins, no claudication, no blood clots, no change in symptoms when exposed to cold, and I think some more stuff. I know my vascular surgeon sent images and case history to some massive network of vascular specialists and the consensus was that it was not buergers (but again, who knows).My neurologist is absolutely convinced that I have Marfan syndrome but I did not get the genetic testing for it yet. And I'm not aware if that can cause this but it's the only other thing I can think of.EDIT: I just went through my mega document of all my labs and tests, and anti phospholipid syndrome could fit, because I do have a history of blood clots and also recurrent miscarriages (5 by the time I was 29). I am trying to find the exact lab names of the tests for this right now to confirm (that's always hard lol). (I found the names, I was tested for aCL IgG and IgM antibodies and results say<10 GPL<10 MPLThey also looked at regular IgA = 288.9, IgM = 50There's a bunch of other IgA and IgM and IgG tests in there too with other words in front of them that I don't understand but all seem normal.