Hi everyone, I was diagnosed with scleroderma sine scleroderma last July with only lung involvement. My question to you all is has anyone else had numerous blood tests where the scleroderma indication was conflicting?
I have now had 4 tests done, at two different hospitals and only the second one showed a strong positive for the SCI70 antibody, the other 3 were negative. 1 test was done at Hammersmith, the other 3 at Bournemouth, and were all done using the most reliable method, I'm told. The positive test was done first, at Bournemouth, a few weeks later was the one at Hammersmith, then 2more tests in December and February at Bournemouth. Because of this and no other signs of scleroderma there is a question over the diagnosis. I have been referred, this week to professor Denton at the Royal Free. Does anyone have a similar experience? My lungs are really bad and it seems like all my doctors, rheumatology and thoracic, both are really good, Are unsure about treatment if mycophenolate doesn't stabilise me.
It sounds like you're certainly doing the right thing in next going to the Royal Free as the specialists there can be more definitive
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Thank you, I hope so, it seems everyone is fumbling in the dark at the moment
Have you requested the specific name of the blood testing method? When I looked into this in the past, there were different testing methods. I often wondered if certain testing method would be slightly cheaper but not too sensitive.
Have you started any treatment and took the blood tests? If you have, antibodies could be lower. I hear this all the time.
I can't remember the name of the method used for the test, but understand that there are two and one is more sensative than the other and this is the one used for all my tests. I've been on mycophenolate for 3 months, when the first 2 tests were done I hadn't started any treatment, so it's possible the treatment is influencing the results, I'll ask at my next appointment, thank you.
Hi, My doctor told me Scleroderma doesn't come by itself. It comes with Raynulds or Lupus. I'm confused now. Your doc said only Scleroderma? I'm very miserable and hope to find a cure! God Bless!
Can't help there Mandy, but is there anyone out there please that knows anything Disseminating accinic? I have inherited from my mum through missy gene 13 or something like that. We have scales on our faces, arms and legs. Believe me when I say they sure do itch. My mum has scratched so much at one of them its now turned into cancer. We don't seem to sweat like other people, the heat stays inside our bodies, the scales keep the heat in it's absolutely horrid. So what with Fibromyalgia and loads of other things as well I think this is the worst. Please is there anyone who knows anything that could help including Doctors names. Many thanks. Ellie.
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