Can you have scleroderma with negative antibody tests?

[Julesboz]

Hi all, I posted about a week ago due to having a bruise suddenly appear on my face. I have only ever been diagnosed with primary raynauds. Due to my other symptoms most of the helpful people who posted recommended that I go to my doctor and get referred to a rheumatologist to check if I have got scleroderma. Anyway, this prompted me to do some research and my symptoms do sound like it could be possible, however I just checked my medical records and I didn’t realise that in Oct 2017 my doctor did blood tests to check this out (they obviously suspected something like this). All of the tests came back negative (anti nuclear factor, mitochondri antibody, parietal cell autoantibodies, anti smooth muscle autoantibodies). Does that mean it’s a waste of time going to the doctors? Is it possible to have scleroderma with these tests being negative? Thanks in advance!

[Jmrose]

Yes. I clearly have it yet I tested negative too. My doctor told me she doesn't diagnose by tests only because when you look at me and my symptoms it's very clear. Good luck

[Julesboz in reply to Jmrose]

Oh that’s great thanks, I will definitely go to the doctors then!

[Fuchia]

Hi there, I have Scleroderma and I have tested negative too. I was pretty doubtful when consultant told me. Yet I definitely have. X

[Julesboz in reply to Fuchia]

Thanks Fuchia, I have booked an apt with my doctor Thursday. Let’s hope she takes me seriously!

[Scooterboy63]

Hello Julesboz, my blood tests also tested negative too. It was pretty clear my issues went beyond Raynaud's and as a result my consultant put me through a number of tests (including a skin biopsy) etc. and I was diagnosed with both localised & systemic Scleroderma.

[Julesboz in reply to Scooterboy63]

Thanks, I’m really surprised by the number of people who’ve been diagnosed without the antibodies. It’s also good to hear that doctors will look at symptoms and not just blood test results, as they can sometimes be a bit regimented in this way. I think I’m going to ask to be referred to a rheumatologist who will have a better idea about scleroderma than a GP I’m guessing.

[Tranhare]

Hi, I too have had several blood tests that all came back negative over the last five years but my rheumatologist eventually referred me to a specialist scleroderma clinic in Leeds. He did this as gradually he was seeing me adding more ticks to indicate scleroderma was indeed the problem and not the consequence of forty years of insulin dependant diabetes. I finally got my diagnosis in Feb this year and now feel I am no more a fraud or non compliant diabetic which is how many doctors make you feel because they don't anything about scleraderma. I live in the North of the UK and am fortunate to only have to travel 80 miles to my clinic appointments, and it's so worth that journey and have a team of nurse practitioners at the end of the phone if something drops up between clinic appointments.

[Julesboz in reply to Tranhare]

Thanks for that. I saw my gp on Friday. She doesn’t think scleroderma is likely. She said my skin would have rashes and all the other symptoms can be explained away individually. However she is doing a full range of blood tests and is willing to refer me to a rheumatologist when the bloods are back.