My problems began in 1999, after a particularly stressful twelve months, at age thirty-six. I had joint pain in my fingers and had a blood test done. I was told that my anti-nuclear antibodies test (ANA) was positive (1:160) and they thought I had lupus. I had never heard of this disease before. I was tested again a few weeks later and it was normal.
A few months later I started experiencing numbness in my arms and legs and became extremely cold intolerant. One day I noticed that it felt like blood was rushing in and out of my hands. Eventually it got so bad that I had it checked out and I was diagnosed with Raynaud's. I was terrified that I would have a car accident or something although I never did. It used to really scare me when it happened.
About a year later I noticed that my hands were starting to change. The skin had thickened quite noticeably on my right index finger and my other fingers are like putty in my hands. If you pinch the skin between your fingers and then let it go, the skin will stay there for quite some time without springing back into shape. It is really weird. My fingers have also changed shape and are much fatter than they were. My rings no longer fit properly. I usually wake up with very swollen fingers and 'pins and needles' so bad I cannot move my arms. My arms get sore when I blow dry my hair or raise them above my head for any reason and my hands go numb doing simple things like putting on my makeup or using a knife and fork.
I have been so tired since this all began and have had numerous tests done for various problems that have all come back okay. It is very frustrating. My current general practitioner believes that I have scleroderma although she does not know what type. I have been to rheumatologists but not for a while as unless you quite obviously have something they can see or you have the appropriate antibodies, there is nothing wrong with you in their opinion.
Over the last few months I have been getting heartburn which I have never had in my life and at first I thought I must be having a heart attack. It was quite painful. I also suffer from reflux and have trouble brushing my teeth without vomiting because of this. I get joint pain in various joints and I am getting more and more stiff in the mornings. I know there is something major wrong with me, but unless the blood tests reveal all, it will be a long, long road to a diagnosis. The only constant has been my last four or five ANA tests have all been positive in a nucleolar pattern with a titer of 1:160. There are no other antibodies showing in my system.
I am not really sure where to go from here but I am very frustrated by all of this and feel that I should be getting treatment now before it gets worse.
Story posted 04-29-04 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Anti-nuclear Antibodies test (ANA)
What is Scleroderma? PDF Brochure
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including Juliet Youkhana; and donations in loving memory of Jim Miller and Arlene Marie Petulla.
Click Here to Donate or Shop
or click on the floating green DONATE sclero.org button.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. 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: