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ShaunTel: Scleroderma/CREST

Every doctor said my joint pain was just arthritis because it ran in my family.

Just Going Nuts, by Sherrill Knaggs, ISN Artist Since 1993, I have had doctors telling me so many different diagnoses that I believed I was really just making it up. It started with Bell's Palsy (without being pregnant) then to Raynaud's. Still, nobody got it right.

Every doctor said my joint pain was just arthritis because it ran in my family. Then when the Raynaud's was unbearable, along came calcinosis on my fingertips. I just found out the name of this tonight.

My new doctor is going with scleroderma, but I believe it is CREST since I have three of the five symptoms. I cannot see a specialist until March 1st and I am really having trouble here. I am very depressed. I would appreciate any input or just a friend.

(Webmaster's Note: As it happens, CREST is a form of systemic scleroderma. It's actually a term that researchers don't even use anymore, since too many doctors were diagnosing CREST but not completing the diagnosis by determining whether it was Limited or Diffuse Systemic Sclerosis. However, since its still in very popular in use, and many people do not know whether they have Limited or Diffuse since their doctor only used the term CREST, we still have the definition for CREST on this website.)

To Contact the Author

New email address needed 05-01-08 SLE
Old Email Prefix: shellyshauntel
Story edited 12-05-05 JTD
Story posted 12-20-05 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Raynaud's Stories
Types of Scleroderma

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.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Shaz: Mother of Son with Morphea

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)