NEGATIVE ENA

Hi

Today I had the results of my ENA screen and it came back negative. Does that mean I don't actually have Systemic Sclerosis? and I have something else? I definitely have Raynauds but could that be all ? Despite all the symptoms of pain in every joint; blisters on fingers that come and go; and Telangiectasia I wonder what is happening to me as also very tired. Anyone else had a negative ENA ?

[zenabb]

Ask that question to your rheumatologist.

[Hidden in reply to zenabb]

Hi I will do but don't see her until mid December so thought I would ask here as people give good advice and I just wondered if anyone else has experienced this.

[gindy]

My bloods were negative, but I've definitely got SSc, it's not always shown in the bloods.

Your symptoms sound like much more than Raynauds, but there are several overlapping illnesses that could show those symptoms (at least this is what my rheumy told me in the beginnings of diagnosis) so it's not always apparent immediately.

Even with neg bloods your rheumy will take into account all of your symptoms, then come to a decision, this may also involve many, many more tests.

Try and stay strong.

[Hidden in reply to gindy]

Hi I have been tested to the hilt for 3 years now, originally they thought I had MS. The only department not visited in my local hospital is Maternity and at 52 I am too late for that .lol

Ah well Ginny I guess I will just have to grin and bear it. Many thanks for your support.

[gindy]

Because our illness is so very under researched we often go undiagnosed for years. I was really lucky as my doctor was studying SSc when I went to him with the first signs/symptoms. As I'd got Raynauds, am female, plus was in my mid 30's I was in the higher susceptible group and I was diagnosed within maybe 18 months.

Don't know about you, but I'm unable to work anymore as I'm periodically housebound and having an actual diagnosis has helped in getting the correct benefits, and help from the gov. I've heard horror stories if you've not been "labelled" yet.

Anyhoo, remember there's always someone here if you're feeling down 😃

[Hidden in reply to gindy]

Hi Gindy

It's really annoying as I had 2 positive tests and was given a diagnosis of diffuse systemic sclerosis and now with getting a negative it feels like starting all over again. I haven't worked for a year and more now either and no way I could so I took early retirement.

I just wish I could have an early bus 🚌 pass as I am finding driving a struggle.

[gindy in reply to Hidden]

Hidden it could be worth your while applying for a mobility benefit. It's called PIP now if you apply. There's a care component, and mobility component. If you're lucky enough to qualify for the mobility side of things you'll get a bus pass early from the council.

Most of us with SSc qualify for the care component due to the debilitating nature of the illness. I get the care side but not mobility. But I've not applied for the mobility component as I still get around, albeit much less than before SSc.

I'd say you've nothing to lose in applying, make sure you get as much medical evidence to back u up if u do.

[dianekjs]

If you want to post your specific results here, it would help to see what exactly you've been tested for at this point. There are at least 8 different scleroderma-associated antibodies, and most general rheumatologists don't know what panels to run. You really need a scleroderma specialist to properly diagnose and treat this disease because it is very complex and quite rare. Most GPs and rheumatologists rarely if ever see it.

Do you have a positive ANA, and do you know what the titer or result was? Do you know which specific antibodies have been tested for? If your ANA was not tested by the (correct) IFA method, there is a very high incidence of false negatives (up to 40%). Your symptoms do suggest SSc, but there must be enough clinical symptoms present to fulfill the diagnostic criteria. Do you have any swelling or skin thickening of your fingers?

[Hidden in reply to dianekjs]

Hi

Thanks for your reply and firstly yes I do have swelling of the fingers and I get blisters that can turn infectious.

Anyway the results I had this time were ENA screen (ELISA) Negative. Tests for : Sm,U1-RNP/Sm, Ro-52,Ro-60, La, Scl-70 and Jo-1.

NTproBNP raised at 211n/g/1.

I don't understand all this but twice beforehand my Scl-70 came back as positive. ? ?

My ANA came back all normal so I wonder what I do have .

Any help most appreciated. Thanks Lynn

[dianekjs in reply to Hidden]

You need to find out if your ANA was run by the IFA method. Is the result simply given as negative, or is there a value and reference range given? A result from an ANA test run by IFA will be given as a titer - two numbers like 1:80, 1:160, 1:320. Some doctors order an IFA ANA and then run the ENA panel. There are numerous scleroderma antibodies that were not tested for in your panel, most notably centromere (ACA). The SCL-70 test has a problem with false positives, particularly when it is a low positive value or when ANA by IFA is negative.

It is possible to have scleroderma with negative bloodwork, although it is much less likely. I would start with checking the ANA testing method and having it redone if it wasn't IFA. You should also consider an antibody test for anti-centromere antibodies. Centromere is strongly associated with limited systemic sclerosis, the most common type. The antibodies tend to be mutually exclusive, i.e. if you are positive for ACA you'd be negative for SCL-70, etc. SCL-70 is associated with diffuse systemic sclerosis, but as noted above, false positives are a significant issue.