• By JoJoeGaray · Posted April 6, 2014
  • In General discussion · 13 replies
  • Newbie here! Just want to introduce myself and say Hello to everyone!!... My name is Jo, diagnosed in 1998 with scleroderma and I'm currently waiting a Double Lung Transplant. I am a wife to a very supportive ...

Change your world, change your words

  • By daytoday123 · Posted April 5, 2014
  • In How my diagnosis has changed my life · 10 replies
  • Think about what you are thinking about. Anyone else out there know any scleroderma cases of spontaneous healing. I know of two I want to share. The first was cited in the book Spontaneous Healing by ...

Open sores on cheeks

  • By floridakaren · Posted April 5, 2014
  • In Systemic scleroderma · 2 replies
  • One more new problem! I have had Systemic scleroderma for over 13 years now. I am also on oxygen 24/7 for PAH. I have dark patches on my face, nose, around my mouth and cheeks due to the Minocycline I ...

Is it safe to wear colored nail polish

  • By MahmC · Posted April 5, 2014
  • In General discussion · 10 replies
  • I have not been diagnosed yet but does anyone know if it is unsafe to use nail polish on my pathetic hands atleast only to brighten me up & remind me of how beautiful my hands once were. My hands are ...

Has anyone been treated with cytotoxin and did it work

  • By Dawnritenour · Posted April 5, 2014
  • In General discussion · 15 replies
  • Been placed on cytotoxin, told me it was a "sledge hammer" been having some nausea and " bone like" pain really scared of this med. my lungs were not being controlled by cell crept and I was on 3000 mg ...

Need a Rheumatologist in Miami

  • By lanusvc · Posted April 5, 2014
  • In Systemic scleroderma · 2 replies
  • Dear friends, I need information about a rheumatologist in the area of Miami-Dade, Florida, who has experience in patients with Systemic Scleroderma. I am currently with a rheumatologist who has no experience ...

list of face exercises

  • By watergrl · Posted April 5, 2014
  • In Systemic scleroderma · 3 replies
  • http://www.sclerodermatt.org/articles/be tter-health/264-face-exercises-for-scler oderma ...

Xifaxan for SIBO

  • By Believer120 · Posted April 5, 2014
  • In Systemic scleroderma · 14 replies
  • I have been dx with SIBO. I have started on Xifaxan 550 3x daily. My intestines feel calmer, my appetite is better and my legs less weak after only 48 hours on the med. Is this normal? I am scared the ...

rubber tree allergy

  • By dotzie · Posted April 4, 2014
  • In General discussion · 0 replies
  • So, I have written here many times for several different autoimmune illnesses that nI have. I have been desaling with arash on my chest and neck, and face and scalp. Although the dermatologist says that ...

Prayer For A Fellow Scleroderma Sister

  • By live2b100 · Posted April 4, 2014
  • In Systemic scleroderma · 31 replies
  • My friend, Princess, who is also diagnosed with Systemic Scleroderma has fluid around her heart and lungs. She has been faithful in taking her medications and making all of her appointments. She is in ...

Chest/Abdominal Pain

  • By Wendy2009 · Posted April 4, 2014
  • In General discussion · 15 replies
  • Hello, I was wondering if anyone has had or have a pain just below your sternum above your belly? I get one every now an then. It starts in the front and shoots to the back and then spreads down my sides ...


  • By kathyboz · Posted April 4, 2014
  • In Systemic scleroderma · 15 replies
  • I have looked all over the site but haven't seen anything about heredity. Does anyone know if systemic scleroderma is hereditary? I have had people ask me this and some were even doctors. But I don't ...

Found my reason for diarhea! I Think.

  • By jorrtomotley · Posted April 4, 2014
  • In Systemic scleroderma · 13 replies
  • I have been dealing with constant diarhea for at last two months! I am down to 102 lbs. scary! I was drinking two Ensure with 350 calories each to gain weight. I was losing weight. I stopped the Ensure ...

g tube vs j tube urgent response needed

  • By mcmanda73 · Posted April 4, 2014
  • In Treatment options · 0 replies
  • Ok so fighting with md's at Cleveland Clinic. I want g tube vs j tube. Md won't do g tube bc of aspiration risk. Eventhough I have not aspirated. My question is: anyone have g tube placed vs j tube here ...

Anyone simular or can help

  • By cc84 · Posted April 4, 2014
  • In Systemic scleroderma · 9 replies
  • hi I've had scleroderma for 8 mths now it started as a pain in the muscle a if it you run a marathon the day prior, now my symptoms have gone crazy- I no longer can bend or get down low, I cant reach ...

Severe Bloating, Constipation, Gas, Pain

  • By ezlivin123 · Posted April 3, 2014
  • In General discussion · 17 replies
  • Not sure what's wrong with me yet...have severe bloating (mostly everyday); IBS-C, heartburn, belching all the time. Have had a colonoscopy (normal); upper GI (normal & biopsy of esophagus was negative ...

Lyme and Scleroderma or Autoimmune

  • By julik · Posted April 3, 2014
  • In Systemic scleroderma · 12 replies
  • Someone asked how the Drs would need Isagenix testing to determine Lyme and why Drs are not making the connections or treating LYME. I recently saw the movie "under our skin" http://www.underourskin.com ...

changes in muscles

  • By angelena · Posted April 3, 2014
  • In Systemic scleroderma · 1 reply
  • Hello, I'm wondering if anyone knows what this is or have experienced this. One of the muscles/cords in the front of my neck is sticking out significantly and the other is almost non existent when I grit ...

do they know what causes this terrible illness yet


Light at the end of the tunnel?

  • By Polenta · Posted April 3, 2014
  • In Treatment options · 12 replies
  • I've just heard that my transplant doctor will put me back on the transplant list if the next scan shows any improvement in the mystery nodule in my lung. Further prayers would be very much appreciated ...

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