Hello everyone. I found this site last night and so I'm a newbie here. I will try to keep this brief. I am very confused and also a bit scared. My story begins 3 years ago. I had always been very healthy but one morning I awoke to a soreness in both hands and my feet were very cold. I really didn't think much of it and thought it would go away. I was due for a 6 month routine checkup with my primary doctor and when these symptoms did not go away, I told him about it. As part of his usual procedure he ran the normal blood tests he usually runs.
This time however unbeknown to me, he added a couple. Two days later I got a call from his office saying all my blood work was fine with the exception that I had tested positive for scleroderma. I had no idea what that was so I looked it up and needless to say what I found frightened me. I immediately called his office and made an appointment to come back in the next day.
When I arrived he seemed a bit surprised to see me. I told him I wanted to discuss my lab work. He said " you mean the scleroderma"?
He said it was nothing to worry about and I probably didn't even have it. Folks, I got a copy of my blood work and the results were ANA-Direct Positive and my Antiscleroderma-70 antibodies were >8.0 From what research I have done on my own, that seems pretty bad. Six months later when I went back to him I was still having the same symptoms and convinced him to send me to a rheumatologist.
It took several months to get in as he is supposed to be one of the best in my area. He talked to me prior to doing any testing and simply said, ' You don't have scleroderma'. Now when he did blood tests and they called me with the results, it was exactly the same. ANA Positive, Antiscleroderma -70 antibodies >8.0 No one has ever told me anything else. If in fact I have the disease I have no idea if it is localized or the more serious type. I still have the same symptoms but in addition out of nowhere last week my left hand became quite stiff and swollen. I haven't injured it. The skin also is extremely tight. I am afraid and no one seems to be concerned. As far as I know, there is no specialist in this field where I live. I know all of you have a lot of experience and I need some help. Would any of you please tell me what you think. As my title said, I feel alone and afraid! Thank you,