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  2. Diagnosis and management of linear scleroderma in children. Clinical evaluation, both physical exam and history, is the most important aspect in diagnosing and assessing activity of linear scleroderma. PubMed, Curr Opin Pediatr, 05/30/2019. (Also see Juvenile Scleroderma Research and Linear Scleroderma) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Hi Quiltfairy - I replied earlier this morning but it didn't go through. I'm glad you're okay and didn't hurt yourself. I fell back on my butt a week ago while weeding. Needless to say, the first thing I did was look around to see if anyone saw me do it!!! I have no medical condition - just purely uncoordinated. Take care, everyone. Margaret
  4. Last week
  5. Helping Students With Test Anxiety. Parents can take steps to minimize their children’s worries about test scores, experts say. New York Times, 06/24/2019. (Also see Anxiety and Attitude) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  6. The International Scleroderma Network thanks Genentech for their sponsorship support. Posted 07/21/2019.
  7. A System to Determine Risk of Osteoporosis in Patients With Autoimmune Hepatitis. Almost 20% of patients with AIH older than 50 years have osteoporosis. PubMed, Clin Gastroenterol Hepatol, 06/01/2019. (Also see Osteoporosis and Liver and Spleen Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  8. Hi Quiltfairy, I'm very sorry to hear that you fell and cracked your head; how very fortunate that your son was around to help you. I do hope you've recovered well and haven't got too much of a headache (or developed concussion). It's so easy to inadvertently trip and fall especially as we get older; I've done it myself several times. Best wishes,
  9. I think I have the best son in the world. We were out trimming weeds from around the air conditioning unit. I was pulling the little ones that came out easily and I really cannot tell any one what happened. Luckily my head hit the lawn instead of the sidewalk; I missed the sidewalk by inches. My son got me into the house and sat with me until he was sure I did not have a concussion. I'm so thankful that I had him. I send you all a blessing. I would love to hear stories of some one or thing that touched your heart. Oh, I am ok and headed to bed.
  10. Scleroderma: An insight into causes, pathogenesis and treatment strategies. Current review is an effort to reflect scleroderma in provisions of its pathogenesis, causative factors, and therapeutic approaches. PubMed, Pathophysiology, 05/18/2019. (Also see Causes of Scleroderma) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  11. New research reveals cellphone use can change our bodies. A new study suggests excessive cellphone use is physically changing how young people's bodies develop. Health News Today, 06/21/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  12. Hi TCoffey, Welcome to these forums! I'm sorry to hear that you have been diagnosed with scleroderma and possible MS overlap and are suffering so many unpleasant symptoms. As well as the links on the previous posts on this thread which you may find helpful, I've included a link to our Causes of Scleroderma medical pages, Environmental and Genetics, in order to give you some more information. Please do let us know the results of your appointment with your neurologist. Kind regards,
  13. I have been diagnosed with scleroderma , and before I was diagnosed I was debating if I had scleroderma or MS? I now wonder if I have both and presented the issues with my doctor who gave me a referral to a neurologist. I have the puffy hands, and calcinosis, and the red spots, and sores on my hands, I also have Raynaud's and Sjogrens. Most symptoms of MS I have except for the MS HUG. I was an armorer in military and was around TCE, PCE, Benzene, Lead, and other chemicals; I also was on a EPA Superfund site where TCE was known to be high amounts in water we drank. But in regards to MS, I have the blurred vision, the lost for words, or at the beginning in 2008-2010, and that got better for me. I have terrible short term memory, nerve pain, cramps, inflammation in the gut, my liver is bad , my kidneys work about half now, and my heart has leaky valve and some hardening in the pericardium. I am a mess in short, but I was always physically fit prior to and during my time in service, I ran cross Country in High school and worked up to running 16 miles a day most days when in service. I think my physical fitness prior to my contamination and start of disease has saved me some from quick downfall. My hands and legs go numb at night mostly, and part of my right leg most days. Sometimes my eyesight is perfect, I assumed it was my high blood pressure, but second thoughts is why I want pictures of my brain. The VA did a spine MRI but failed to read them, and they don't do well in specialist area of care anyway, they could not even diagnose my scleroderma; I had to go out and get my regular doctor to refer me to a rheumatologist, and they checked my ScL-70 which was 92, which most likely means diffuse. My face has pulled in around the mouth area, in fact I get cut lips in corner of mouth a lot. The chemicals I mentioned above are found in many household cleaners, and paints and paint thinners, model glues etc.TCE has been tied to scleroderma, and many of the Veterans from Camp Lejuene have also got scleroderma, so it has some environmental potential for so many men to have scleroderma and same exposures to certain chemicals. My genetic background is long history in Ireland, beginning in area in North Africa, with the Basque that live between Spain and France. So I assume that we were basque and moved to Ireland when it was first being settled or close after. My last name is found abundantly in Ireland, Britain, Wales, Australia. America. My blood type and RH factor negative also confirms my idea of being basque, with most people with my blood are Basque and Moroccan . Whatever the case I have read many stories about TCE being in 40% of our water in USA. Really scary idea when they say it has such a bad effect on some of us with Irish background. I have seen communities that have big problems with this, and the cases of autoimmune and cancers like leukemia is higher than normal. So anyway I will try to let you know when neurologist gives me more.
  14. Factors of importance for reducing fatigue in persons with rheumatoid arthritis: a qualitative interview study. The participants in this study expressed that physical activity was important in handling fatigue, but also that this insight could only come from personal experience. PubMed, BMJ Open, 2019 May 29;9(5):e028719. (Also see Symptoms and Complications of Rheumatoid Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  15. Whole blood viscosity in systemic sclerosis: a potential biomarker of pulmonary hypertension (PAH)? Higher whole blood viscosity levels in scleroderma patients with PAH was an independent indicator for PAH development. PubMed, Clin Rheumatol, 05/26/2019. (Also see Prognosis of Pulmonary Hypertension) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  16. The International Scleroderma Network thanks Jack and Elizabeth Lewis for their monthly pledge support! Posted 07/16/2019.
  17. Earlier
  18. Hi Stacey, Welcome to these Forums! I'm very sorry to hear that you've been diagnosed with CREST and that it is affecting you so badly. However, I'm glad to hear that you are receiving the best treatment and have a good medical team, whom I'm hoping will be able to help you with suitable medication and it's possible your disease may stabilise in the future. Kind regards,
  19. Hello to all. I am a Registered Nurse from South Carolina. I am 47 years old and was just recently diagnosed with CREST. It took over a year to get the final diagnosis. I was told for 3 years I had lupus, I had my doubts and kept looking for answers. I am now in stage III kidney failure and no one is really sure why. I go to a large acclaimed hospital for care that has a scleroderma center of excellence. I feel very good about my care. What I don't feel good about is how I feel right now. I have significant joint pain daily with horribly swollen fingers and ankles. The worst part for me other than the pain and fatigue is the swallowing issues. I just had a swallowing test a few weeks ago and was told I have classic scleroderma esophagus. I choke on heavy foods like, chicken, beef, vegetables and anything bulky. I am overweight and this is so frustrating. The only things I can eat without vomiting or pain is chips, candy, popcorn and ice-cream all of which I do not need. This is not a disease that I ever thought I would be battling. I have a 24 year old son with autism and muscular dystrophy, so that is hard enough, but to care for him feeling like this - No fun.
  20. Why it's important for patients to look at their doctor's note. Some patient advocates say a doctor's notes offer insights patients might never hear from their physician, putting patient and provider on the same page. Health News Today, 06/19/2019. (Also see Physician and Patient Relationships) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  21. Hi Allie, Welcome to these forums! Without wishing to state the obvious, I would suggest that as much as possible, you should avoid taking cold showers. Perhaps the best idea if you can't avoid it would be to stay in the cold water for as little time as possible, as Raynaud's tends to be worse if your core gets cold (not necessarily your extremities.) I've included a link to our medical page on Raynaud's, which does include many tips for keeping warm and preventing an attack. Kind regards,
  22. Hello, I have Raynaud's pretty severely and I am going on a mission trip to a third world country in about a month. The only problem is that while I am there I will only be able to take cold showers. Does anyone have any suggestions I can try so the cold water doesn’t trigger my Raynaud's too bad?
  23. Tapering biologic therapy for people with rheumatoid arthritis in remission: A review of patient perspectives and associated clinical evidence. More research is needed on tapering biologics, and should include studies of patient perspectives as well as health economic evaluations. PubMed, Musculoskeletal Care, 05/30/2019. (Also see Treatments for Rheumatoid Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  24. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 07/14/2019.
  25. Low RUNX3 expression alters dendritic cell function in patients with systemic sclerosis (SSc) and contributes to enhanced fibrosis. We show at least two pathways potentially causing low runt-related transcription factor 3 level in SSc plasmacytoid dendritic cells. PubMed, Ann rheumatologist Dis, 05/24/2019. (Also see Dendritic Cells) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  26. New Research Is Focusing on Treating Teens' Suicidal Thoughts With Support of Friends, Family. Past research has shown that people with more connections, stronger social networks, and more social support will be better off in terms of mental health. Time Healthland, 06/10/2019. (Also see Suicide Prevention) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  27. The International Scleroderma Network thanks Network for Good donors for their support! Posted 07/12/2019.
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