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Pat: CREST Syndrome

I just do not understand it.

Daisies for Pat Hi. I am fifty-eight years old. I have had a rash on my neck and back for twenty-five years. I have been to many doctors and their treatments did not work.

About eight years ago, I started getting hard lumps on my right knee and both of my elbows. The doctors did not know what they were. I went to a dermatologist in 1994. He did a biopsy and said I had discoid lupus. He treated me for four years.

In 1997, the lumps on my knee got infected. I was in the hospital for twelve days. They had to do surgery and take calcium deposits out of my knee. In May of 1998, they did surgery on my left elbow and it would not heal, so the doctor did a second surgery on it after eight months of draining.

In January of this year he did surgery on the right elbow. It got an infection and I was in the hospital for three weeks. I had two more surgeries on my elbow while I was in the hospital. My elbow and arm are not well yet.

Now the doctor says I have calcinosis, which is part of CREST. I am not receiving any treatment right now.

If anybody has the same symptoms I do, or any questions about this, please email me. I just do not understand it. Nobody in my family has this disease. Help?

To Contact the Author
Pat
New email address needed
Old Email Prefix: pat1021_2000
Story Posted 8-29-00
Story edited 7-13-03 SLE
Email comment posted 7-13-03

Story Artist: Shelley Ensz
LINKS
CREST Syndrome
Calcinosis
Difficult Diagnosis
Discoid Lupus
Types of Scleroderma
New Personal Stories
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(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
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