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Found 7 results

  1. I've had autoimmune symptoms for a few years, which had started in my younger teenage years. They were always the standard low-grade fever, muscle pain, high ANA (always around 300 when tested) , swelling and Raynaud's syndrome. None of the doctors I've seen knew the cause for these symptoms, and I eventually learned to adapt to them. Recently, I've been overwhelmed by pain, having a hard time with general motor functions (and was actually tested for motor neurone disease (ALS) ) hair loss, weight loss (I generally have a hard time keeping on weight), fingers becoming more misshap
  2. Hi, everybody, I live in a very warm and humid city, at least 30º C all the year. Last week I travelled to a colder city, it was autumn there (in my city we don't really have seasons) and it was about 20 to 30º C; I felt great! There people don't use air conditioners and the temperature is constant inside and outside places. I don't feel weird wearing more clothes in cold weather. Raynauds and digital ulcers are very painful and since they came into my life, I had discarded my plans to move to a colder city, but now I'm wondering what is the best thing to do. Please, tell me you
  3. Good afternoon everyone, I have joined this forum as a wife of a CREST Syndrome sufferer (Calcinosis, Raynaud's Phenomenon, Esophageal Dysmotility, Sclerodactyly and Telangiectasias). He has been recently diagnosed with this syndrome and has been on medication as follows - 4 Prednisone, 1 folic acid, 1 Potassium (every day 7 days a week). He also started with 2x Methotrexate Tablets once a week and has built up gradually to 6 Tablets once a week (the Physician has also decreased the Prednisone gradually and he is now only taking 1 a day for the next 2 weeks and then after that he
  4. My wonderful wife of 33 years died last Sunday due to Septic Shock. She was very bloated in her abdomen which was not unusual for her as she had been diagnosed with irritable bowel syndrome (IBS) 25+ years ago. She vomited because of the abdomen issue and constipation. Some vomit must have aspirated into her lungs and in 4 hours she was in ER and having a ventilator tube placed into throat as she couldn't breathe. After 7 days in ICU she was able to me moved to a sub critical ward and no ventilator tube. She was improving but at age 78 and frail health there was very little chance of survival.
  5. This is my first post on this forum. I have not been given an official diagnosis yet that I have this illness so I am trying to stay positive and I have seen some very positive stories of people getting with life as close to normal as possible. I have had Raynaud's for a number of years now but recently it has become more severe and has spread to other parts of my body, feet, nose and lips in particular. Even if I am not having a full blown attack, my finger tips remain bluish and cold and I have had my first 'hack' on one of my finger tips due to skin drying out and becoming quite thin
  6. Sara P: CREST Syndrome (Update) It has been three years since I've posted and I am happy to say I am still doing well..... Posted 04/15/2014. There are over 1,000 Patient and Caregiver Stories on the main Sclero.org site. Over 300 of these stories are featured in the Voices of Scleroderma book series.
  7. Hi, I'm new to the forum and have been reading a lot of the information. A support group is always helpful. I've never been that concerned with the CREST syndrome I've had for about 15 years now. Raynauds being the most worrisome of the C.R.E.S.T. conditions. In April I was diagnosed with Endometrial cancer. I had a complete hysterectomy in July. It was in Stage 1a, but the tumor was a Grade 3. I was told the margins were good, meaning the tumor was contained inside the uterus and the parts that were cut away were a good distance from the tumor (layman's terms!) Because of the tumor be
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