How was your Scleroderma diagnosed? - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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How was your Scleroderma diagnosed?

dacharya profile image
14 Replies

If you have Scleroderma then I would like to know how your Scleroderma is diagnosed? Was it confirmed from the blood test?

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dacharya
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MissusTee profile image
MissusTee

from a mixture of symptoms and blood tests. Took 10 years for me in the 90’s despite a gangrenous finger ulcer!

dacharya profile image
dacharya in reply toMissusTee

Which blood test confirmed that you have Scleroderma?

MissusTee profile image
MissusTee in reply todacharya

ANA anti centromere.

dacharya profile image
dacharya in reply toMissusTee

In your blood report how much was you ANA and centromere levels and did it cross the limit?

MissusTee profile image
MissusTee in reply todacharya

It was at the highest titre measurable which is 1:2560

dacharya profile image
dacharya in reply toMissusTee

I don't get it. What is the maximum limit on your report and why is it showing as a ratio of 1:2560? What does it mean?

MissusTee profile image
MissusTee in reply todacharya

It demonstrates the antibody levels so I have very high anti centromere antibody levels in my blood tests.

dacharya profile image
dacharya in reply toMissusTee

So, what should be the normal range according to the report and how much high was yours?

MissusTee profile image
MissusTee in reply todacharya

Normal is 1:40 and under. So mine is very much higher.

dacharya profile image
dacharya in reply toMissusTee

Could you ask your doctor whether one can still have Scleroderma if the levels are within the limit?

MissusTee profile image
MissusTee in reply todacharya

You can but it’s rare.

Kefaloniadreams profile image
Kefaloniadreams

Hi. I was diagnosed by deep biopsies into my arm and leg.

dacharya profile image
dacharya in reply toKefaloniadreams

In which hospital it was done and was it painful?

StormySky profile image
StormySky

Mine was diagnosed really quickly, within 2-3 months of onset of symptoms. Symptoms at presentation: rash up legs, peeling skin around eyes and mouth, swollen, black hands (sufficiently swollen there was little movement in them, even when I concentrated really hard on trying to get them to move), deep lesions to skin on palms, fingers and heels with like a crust of thickened skin in those areas, weak muscles in forearms and hands. It was a very experienced dermatologist who suspected it and ordered a blood test which found positive ANA, presence of SCl/PM antibodies and high inflammatory markers (I had a skin biopsy above the area of the rash which didn't show much). Diagnosis confirmed by a rheumatologist around a year later, by which time I had developed Raynaud's and obvious nailfold capillary abnormality (can see them with the naked eye). Initially, no, I did not feel particularly unwell and I did not have pain in my joints, etc, although my hands felt a bit sore. Rash was very itchy though. Biopsy was quite sore, but tolerable. I don't think the local worked when they took it, but I asked them to just carry on anyway as I just wanted it over with! Stitches just got itchy before I asked someone to take them out.

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