Anyone here with negative ANA results?

[puggyboy]

Hi,

I've recently seen a consultant at the Royal Infirmary in Glasgow, who tells me that he is highly confident that I don't in fact have scleroderma, mainly based on the fact that my ANA results were negative. I'm not 100% convinced as I thought there was a reasonably high false negative rate. Does anyone here have a positive diagnosis but negative results?

Follow-up question! I've also read that nailfold capillary microscopy can be a very useful test - is anyone aware of a doctor in Scotland who actually does this test though?

thanks

[Hidden]

Hi puggyboy,

I’ve had both a positive and later a negative ANA test. My rheumatologist explained it to me that a positive is a definite but a negative is not a definite - so a negative result doesn’t mean no scleroderma conclusively. I had a nailfold capillaroscopy; it’s very useful as they can see physical changes. Have you considered writing to your doctor and asking to be sent for that test to put your mind at ease? It’s really just looking down a microscope at your hands so in terms of funding isn’t one of the more expensive tests. I think it’s reasonable to ask for it.

[puggyboy]

That's interesting, thank you for that! I did mention the nailfold test to me GP, who said 'Ive never heard of that and you wouldn't be able to get it on the NHS'. Sigh. Bearing in mind I'm on my 4th GP now as the others dismissed me entirely as being 'just stressed'. Going to write to the rheumatologist and see what he says - thanks for the advice

[babyinny]

Hi Puggyboy I am glad to here you don't have scleroderma. I attended Royal Infirmary in Glasgow were I too was advised the consultant is confident I don't have scleroderma. I am ANA positive but also have positive test for centromere antibodies .I have had heart and lung test and the results are re-assurring I also had nail capillary test at Royal Infirmary which was negative .You may want to speak with your consultant in Royal about nail test.I am having a lot of skin problems and recently had a lump removed on my gum which has resulted in very prominent scar tissue . I also have terrible neuropathy in my mouth which is very worrying so like you I am not convinced.

[puggyboy in reply to babyinny]

Hi there - sorry to ask this after all this time, but do you remember who organised your nailfold test? Am trying to get my GP to request one but he seems unsure who to write to to ask for it!

Thank you

Paul

[babyinny in reply to puggyboy]

Hi Paul

It was rheumatologist at royal infirmary , are you any further forward ?

Kathy

[puggyboy in reply to babyinny]

Hi there

Hmm, not really - I was seeing a Dr. McCarey, but he's discharged me entirely saying it's not a rheumatology problem. So now I'm a bit stuck as I'm not convinced, and would still like this test done. Problem is my GP doesn't know who to ask. I don't suppose you remember the name of the rheumatologist that organised yours? It's a bit ridiculous that I've got to get my GP a name, but there you go!

Cheers,

Paul

[babyinny in reply to puggyboy]

Hi Paul

I was referred to Dr Madhok's clinic in Royal Infirmary but I never got to see him. It was Dr Aitken did the nailfold test its just an ultrasound .

Kathy

[puggyboy in reply to babyinny]

Ah, thank you so much for this! That's a huge help

Maybe I can finally get this damn test done!

Cheers,

paul

[puggyboy]

Hi there - I'm due to see him again next week, so I'll ask about the nailfold thing. It baffles me why I have to ask for such a simply, cheap test! But then I'll also have to ask him to actually examine me this time, as he hasn't done that either. Sigh. I sympathise entirely with your position, we're taking a lot on trust here.

Oh by the way - because I had a lot of doubt about my consultant's opinion, I actually wrote to Prof Denton at the Royal Free, who said he'd be happy to see me either as an NHS or private referral. I have no idea what his NHS waiting list is like, as it looks likely that I have some condition other than scleroderma. But in your position I'd definitely consider asking for a second opinion, as I remain worried about the level of expertise in these rare conditions in Glasgow...

[Geronimo_s-Girl in reply to puggyboy]

I know you posted this ages ago, but did you get any answers in the end? I too feel as though I've been dismissed too early. I'm based in England rather than Scotland, so don't know if that changes anything.