Hi, my name is Debby. I am 37 years old and I was just diagnosed in March 2000 with Crest syndrome form of Scleroderma.
I had been suffering from heartburn, fatigue and joint pain for nearly a year. I saw my Dr. who sent me for blood work which yielded no
answers. After urging from family members, I underwent testing at the Mayo clinic in Jacksonville were I was
finally correctly diagnosed with scleroderma. I was stunned when I was told that I had scleroderma. I saw a rheumatologist, who told me he was quite sure I had Crest Syndrome. More blood tests confirmed I did. I also have Raynaud's and Sjogren's syndrome. I was prescribed prednisone and tagamet. After several months, with no improvement, I stopped. I then developed "post-steroidal acne flare-up". I felt like I was back in high school! My entire face and neck were covered in pimples, because I had not weaned off the prednisone correctly. I started MSM, which is a powerful, natural alternative for joint pain, which I saw on Larry King. It has helped somewhat, but not significantly. My hands are red and swollen all the time. I can no longer open soda
cans and bottles.
I live near the ocean, and try to walk 2-3 times a week as the sand is not so hard on my knees, and the sea and sun are very relaxing. My knees however, continue to deteriorate. I saw my rheumatologist recently and he prescribed Vioxx and changed me from Tagamet to Prilosec because I told him whenever I eat I feel as if the food lodges in my throat.
I have been very confused and upset since my diagnosis. My husband of 18
years, Jim, and my family have been very supportive, but I don't know how
to help them deal with it when I don't even know how to myself. I have
emotional ups and downs every single day.
Debby
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