Hi 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.
Email: [email protected]
Story edited 09-21-08 JTD
Story posted 10-07-08 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
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