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Rhonda: Systemic Scleroderma
I assumed it was the stress and I thought I was depressed and being a hypochondriac!

Renaissance by Shelley EnszHi everyone! I have recently been diagnosed with scleroderma, and am still trying to wrap my brain around this. I found your site, read your postings on the support page, and am now ready to share my story, and hopefully get some advice from you!

Symptoms started about the time by mom died from brain cancer two years ago. I assumed it was the stress and I thought I was depressed and being a hypochondriac. My joints ached, and I was tired most of the time. I felt like food was sticking in my throat. My reflux, which had been reasonably under control with Nexium for years, worsened to the point of vomiting blood last spring. At that point I knew I could not put off going to the doctor any longer.

In August, I was told I have systemic scleroderma sine scleroderma after seeing four specialists (orthopedics, gastroenterologist, gastroenterologist surgical consultant, and finally a rheumatologist) and lots of tests which confirmed esophageal erosions and dysmotility, severe reflux, a large hiatal hernia but fortunately no sign of lung or heart involvement.

I do not have Raynaud's but have carpal tunnel symptoms and diffuse joint pain in feet, hands, hips and shoulders, which compared to the gastrointestinal stuff, is secondary at this point. The fatigue, however, is more of a problem, and I know by reading your postings that you know what that is like, better than I could describe it!

So now the doctors are trying to decide whether I should have a fundoplication surgery or not as the rheumatologist is concerned the surgery may worsen my swallowing difficulties, but the reflux is so bad I may need to have the surgery anyway. I would have to limit my eating to soft foods afterwards which does not seem so bad since that is mostly what I am doing now.

The surgeon is recommending a 'partial wrap' which he says will lessen the negative effects on the swallowing. He also says the surgery needs to be done 'open', as the hiatal hernia is too large to close laparoscopically, but this will significantly lengthen the recovery in and out of the hospital.

I don't know if this is the start of skin symptoms or is totally coincidental, but last night one side of my face started itching; this morning, the cheek is red, warm and slightly raised. I have also noticed that lately my eye on this side is watery. Is this typical of scleroderma?

I would like to hear from you all, including those who have had fundoplication surgery. What have been your experiences? I am still overwhelmed with this diagnosis, and am trying to stay focused on the present, but cannot stop worrying about the future. Will it progress? How long will I be able to work? How will it affect my family? I know these are all things you have had to face too!

Thank you for your support.

To Contact the Author
Rhonda
Email: genuchi@aol.com
Story edited 09-21-08 JTD
Story posted 10-07-08 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
LINKS
Diffuse Scleroderma
Diffuse Scleroderma Stories
Fatigue
Fatigue Stories
Gastrointestinal Involvement
Heartburn (Reflux)
Heartburn (Reflux) Stories
Skeletal Involvement
Skeletal Involvement Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Scleroderma
Types of Scleroderma
What is Scleroderma?
ISN Story Editor: Judith Thompson Devlin
Judith Rose ThompsonJudith 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 !
New Personal Stories
Alana: Scleroderma (Peru) I cannot open my mouth completely, I have lost strength in my hands, I have breathing problems, my face looks different, my skin is really tight and I have lost my appetite...
(Español/Spanish) Alana: Paciente Nuevo con Esclerodermia (Peru) Le dije que ya no podía abrir la boca completamente, he perdido la fuerza de las manos, tengo problemas respiratorios, mi rosto está diferente, mi piel está dura y he perdido casi el apetito...
Kristy C: Generalized Morphea The only place where I do not have any morphea is my face, which I am very thankful for...
(Update) Raymond: Surviving Son of Scleroderma Patient On October 19th, the Herbert family lost another member of the family to scleroderma. My uncle Edmond has passed on...
Sharon H: Scleroderma/Morphea It has been thirty-two years living with this and it has progressively gotten much worse and has spread...
Teena: En Coup De Sabre My mother and I went to Johns Hopkins Hospital. They did what was called 'Grand Rounds' where about fifty doctors were looking at me taking pictures and videotaping me...
More New Stories: November 2008
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