2 posts in this topic

Hello everyone. My name is Brooke, and I wanted to give you a quick background on my story.

I was only 19 at the time, in school for cosmetology. I had been seeing a dermatologist about my acne, and she prescribed me minocycline. I had been on the minocycline for about a week, when all of a sudden in school, I passed out right in class. Upon awakening, I had a panic attack, and got sent to the ER. They assumed I was allergic to the medicine, so they sent me to my original dermatologist to run some bloodwork. I was also being tested for lupus, because apparently minocycline can cause lupus in some patients.

They ran the test called an ANACP (blood test) on me.

A little over a week later, I got my results yet and was absolutely horrified to find that my Scleroderma Antibodies was elevated. My level was 58, which I see here on other forums that you guys have numbers like 3.3 or decimals. Why is mine different?


Anyways, I went to see a rheumatologist followed by a pulmonologist and cardiologist. All came back normal, and my rheumatologist told me to keep a close watch, but that most likely I didn't have it. I was never diagnosed. She also told me to start taking vitamin D vitamins because I was deficient.


Two years later and I am 21, and just a week ago I had went to see the cardiologist for some heart palpitations ( Which turned out to be anxiety related) but he was asking what my rheumatologist had decided about my scleroderma. He offered to repeat the lab test for me, which I thought would be a good idea since I hadn't had it repeated yet. So I let him. Just today I got the lab result back and I haven't been able to stop crying. My scleroderma antibodies are 54, with the normal value being from 1-20. Going back to see the rheumatologist again. I'm so scared. Ive been so healthy all my life and now all of a sudden I have this lab result showing there is a possibility I have a disease. I guess I would just like some reassurance that I'm going to be okay and that there may be a possibility of some sort of fluke or that maybe my natural antibodies are just slightly elevated.


Any help would be appreciated, I'm just so terrified and I just need to speak to someone.


Thank you all so much.

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Hi Brooke,


Welcome to these forums!


I'm sorry to hear that you've had worrying results from your blood tests. Whereas I have no medical training, I would point out that although positive blood tests can help towards a correct diagnosis, they are by no means the be all and end all and should only be taken in conjunction with the clinical signs of autoimmune diseases. It is perfectly possible to have positive antibodies and yet never go on to develop the full blown disease and vice versa as many of our members can testify. The diagnosis of Scleroderma is notoriously difficult , which is why we do advise our members, if possible, to consult a Scleroderma specialist.


I've included a link to our medical page on Autoantibodies to give you some more information. Whilst I can understand how worrying and upsetting the prospect of an illness like Scleroderma can be, I'm afraid autoimmune diseases can be exacerbated by stress and anxiety. Obviously, I can't tell you whether you will develop full blown Scleroderma, but hopefully, at your next rheumatologist's appointment, he will be able to review your results and possibly instigate more tests to try and reach a diagnosis. In the meantime, I would suggest that you try not to worry about your blood tests more than necessary (easier said than done, I realise; I've been down that road, myself! ;) )


Please do let us know how you get on with your rheumatologist's appointment.


Kind regards,

Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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