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Donna D: Systemic Scleroderma
No one shares a timeline with me or will tell me what to expect next.

I am a 59 year old female and I was diagnosed with systemic scleroderma three months ago.

At this time the problems are mostly skin related, with hardening and lesions. I am tired a lot and am in pain under my arms. The back of my knees are so hard that I have difficulty bending. I am frequently chilled.

I'm just beginning to have difficultyswallowing and have pain in my kidney area.I am taking Minocycline 100 mg. twice a day. Ithas helped my skin to soften and the lesions tostart shrinking.

My legs do not straighten out in bed at night due to swelling in the groin area and tightening of the skin. I seem to be puffy. I do not have the typical involvement in my hands and it took months and many tests to diagnose my case.

No one shares a timeline with me or will tell me what to expect next. I am trying to just enjoy each new day and attack each new symptom as it comes about.

To Contact the Author
Donna D.
New email needed 09-26-06 SLE
Old Email: ARTDAWM@prodigy.net
Story submitted 6-20-02
Story posted 7-11-02
LINKS
Difficult Diagnosis
Dysphagia (Difficulty Swallowing)
Reflux
Scleroderma
Skin Fibrosis (hardening)
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.
New Personal Stories
Donna: CREST, Raynaud's, possible Fibromyalgia I was diagnosed with CREST (Limited Systemic Scleroderma) by a rheumatologist in 2006. This wasn't really a surprise to me as my mother was diagnosed with diffuse scleroderma in 1998...
Jessica G: Parry-Romberg Syndrome By the time I was about five years old, the disease had already disfigured my left side drastically. I have had over fifty operations and surgical procedures for Romberg's....
Leslie R: Scleroderma, Vitiligo, Lupus, Anemia, Hypertension and Type 2 Diabetes He told me that I have scleroderma and explained what this disease is about. After suffering so long I finally got some answers...
More New Stories: Feb-August 2008
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