SCLERO.ORG
Search
Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Tui: Limited Systemic Scleroderma

New Zealand

I have just completed my third endoscopy and argon laser treatment for watermelon stomach, one of my several scleroderma symptoms. I find the aftermath painful and cannot eat normal meals for seven days afterwards, yet it implies on this web site the treatment is not painful. Do others find it painful?

I am wondering whether such treatments will be ongoing? My next one is due in twelve weeks. Will I likely reach a point where no further treatment is necessary?

My Limited scleroderma seems to be reasonably active.

I have a second question. I have a history of neuromuscular weakness which predates my scleroderma diagnosis. It is associated with extreme thirst for which I am on a potassium supplement.

Does anyone else have this combination of symptoms - my scleroderma ones, besides watermelon stomach are "sausage fingers", calcium nodules around the knuckles, Raynaud's, white "freckles" on my arms, a large patch of morphea on my back, and areas of darkened skin. And fatigue, which is admittedly much better since the bleeding was checked in my stomach and my blood count greatly improved.

To Contact the Author

Tui
Email:Withheld by Request
Story edited 04-06-06 JTD
Story posted 06-09-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
LINKS
Limited Scleroderma
Morphea Stories
Raynaud's Stories
Watermelon Stomach

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 Tutter H: Lichen Sclerosus
 
Recent Donors
See ISN News for recent donors, including memorials for
Christine Kane, Joleen M. Cascaden.
 

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:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA

Email [email protected] to request our Welcome email, or to report bad links or to update this page content.

TOLL FREE HOTLINE 800-564-7099
Free to U.S. and Canadian Callers. Ask for our Free Info Packet by mail or email!
Scleroderma, Pulmonary Arterial Hypertension, and related illnesses.
Privacy Policy.

 
The most important thing in the world to know about scleroderma is sclero.org!
Donate Now
Copyright 1998-2017, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.