They did my blood work, sent it off, and told my poor parents it would be two weeks before we knew anything. I believe it came back positive, and the doctor gave my parents information on all the terrible possibilities, told them they really did not have a treatment for it (this was in the late 1970's) and I guess just to take care of me the best they could. At the time, mom and dad never really told me much about it. I grew up just thinking I had a weird skin disease.
Last summer, in July of 1998, I developed a new spot on my right breast. This one was a little different than the rest with a light purple halo around it, and it prompted me to return to the rheumatologist who had diagnosed me. Of course, he no longer had any of my records or remembered me, but he said this meant the scleroderma was active again and I had to get right on it. Needless to say, I left his office not really understanding what all this meant.
I was referred to a dermatologist who biopsied this spot. It came back positive for morphea consistent with scleroderma. I went back two or three more times for him to inject Kennalog around the borders of this spot, and was told to return if I developed any more. At this point I got on the Internet and started investigating what all this was about. I quickly thanked god that mine was a more "benign" form as the doctor had told me.
This year, in September of 1999, I went into my orthopedic doctor with some pain, numbness and tingling in my right hand. He said it is from a ganglion cyst in my wrist. I also had been in to my family doctor, who ran some blood work and discovered my sedimentation rate had gone from 20 to 40, but my antinuclear antibody (ANA) test came back negative, after being positive last year.
I am scheduled to have this cyst removed next week but I am concerned that some of these symptoms might be related to my scleroderma.
I have been very appreciative of the information and stories I have read on this web site. I will continue coming to it for more information as it seems to be the only way to find out what to really expect and to help know what to look for with this disease. Keep up the good work.
New email address needed 7-13-03 SLE
Old Email Prefix: whnycutt
Story posted 10-2-99
Story edited 7-13-03 SLE
Story Artist: Shelley Ensz
Antinuclear Antibody (ANA)
Types of Scleroderma
SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses.
We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: