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tw1nkles

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About tw1nkles

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    Beaverton, OR
  1. tw1nkles

    Welcome New Members!

    I'm new here on the forum. About 7 months ago I was diagnosed with limited scleroderma (CREST Syndrome). I originally saw my doctor for swallowing issues. After an endoscopy and an esophageal motility study, we found out that I have zero motility in my lower esophagus and no pressure from the sphincter muscle leading to my stomach. I am taking omeprazole to help with the acid, and nifedipine for Raynaud's. I've had the Raynaud's since I was a late teenager, but the swallowing problems started about 4 years ago. I never had health insurance until I got married last year, so never saw a doctor until then. What a surprise! My primary doctor sent me to a GI specialist. The GI specialist did a bunch of tests and sent me to a rheumatologist. The rheumatologist did a couple of tests and told me I have CREST, I have since decided that I need a new one. (The search begins!) There aren't any scleroderma specialists in my area at all, and I can't afford to fly all over the country, but there's got to be someone nearby that knows a little more. It's good to see other people going through some similar situations, so I'm not completely alone. My husband tries to be supportive but doesn't understand what I'm going through at all.
  2. I know that I could use a hug or two these days, so I'm more than happy to give some out as well! :emoticon-hug: :emoticon-hug: :emoticon-hug: Looking forward to participating on this forum and learning more about scleroderma!
  3. tw1nkles

    Limited Scleroderma with mainly GI symptoms

    See, this is why I need a different rheumatologist! I had an echo and a chest x-ray, but I've never had a lung function test, never was given any medication options other than what I stated above. I've seen that list of specialists before but none of them are close to me at all - I'd have to fly somewhere :(
  4. Hi Michele, I have horrible dry skin on my calves and hands, and just recently discovered Cetaphil Moisturizing Cream. It comes in a white tub with a blue lid, and I love it. I slather it all over my calves when I get out of the shower and it's really making an improvement where various random lotions didn't, even on my hands. It's like $13 but it's a big tub and for me it's worth it. Maybe it would help with yours too? I hope you get some answers soon!
  5. tw1nkles

    Limited Scleroderma with mainly GI symptoms

    I was also recently diagnosed with limited scleroderma (CREST). I originally went to the doctor because of swallowing issues, and then after having a motility study we found that my lower esophagus is completely immobile - it registered zero pressure. I take omeprazole once daily to help keep the acid in check. I also have Raynaud's and am taking nifedipine to help with that. There is not much skin involvement on my hands - the skin is very dry, they are a little puffy, and I have a few of the little red dots near the cuticles on a couple of fingers. It sounds like we're in the same boat :) However, I need a new rheumatologist. Mine basically said "You have CREST Syndrome. You're fine." and to come back every couple of years for an echocardiogram. And then she argued with me about my esophageal motility test results. I wish I was close to someplace like the Mayo Clinic!
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