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
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.
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