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  2. 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.
  3. Yesterday
  4. 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.
  5. 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,
  6. 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.
  7. Last week
  8. 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.
  9. 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.
  10. The International Scleroderma Network thanks Jack and Elizabeth Lewis for their monthly pledge support! Posted 07/16/2019.
  11. 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,
  12. 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.
  13. 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.
  14. 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,
  15. 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?
  16. 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.
  17. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 07/14/2019.
  18. 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.
  19. 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.
  20. The International Scleroderma Network thanks Network for Good donors for their support! Posted 07/12/2019.
  21. Earlier
  22. Hi Janet, I'm sorry that your symptoms are worsening. Whilst I've no doubt the consultant you've selected is good at his job and specialises in gastrointestinal problems, we do recommend the scleroderma experts on our list. This is because scleroderma is such a complex disease and really does require a specialist in the disease. I'm in the UK and although I was treated very successfully by a top lung hospital (as I have lung involvement) I was still referred to The Royal Free Hospital as well, which contains top rank scleroderma experts, who are experienced in all the little idiosyncrasies which scleroderma can produce. We do have a scleroderma expert in Australia on our list, so perhaps it might be worth your while contacting them first, before travelling to the US. Kind regards,
  23. Hello friends, I’m thinking of contacting a Scleroderma clinic in the US with a Gastroentrologist who has a good knowledge and experience with Scleroderma patients. While going through the info links I found in ISN, I am thinking of contacting Prof. Michael Brown in Rush University medical centre. I think I need to get in touch with the clinic and the Gastroentrologist before travelling to the US, so I know where I am going and I might even be able to get some of the tests done in Australia where I have insurance. Is there any Scleroderma clinic or doctor you recommend that deals with gastro issues? I am not doing well at all and I feel I have been getting worse. I really need help. Everyday is becoming such a battle and never ending struggle and I don’t have any energy. Exhaustion is unbelievable. My joints are aching more and the joints in my right hand are getting very sore. All I am on regularly is an antidepressant. Nothing to help with Gastrointestinal symptoms. Sometimes I feel I am literally suffocating and it’s so scary. Can you help me find the right clinic for me in the US? Kind regards Janet
  24. Hi Christina, I'm very sorry to hear that you're suffering so badly with vertigo and are experiencing such unpleasant symptoms. Thankfully, I haven't suffered with this condition myself, but I've included a link to our medical page on Brain (Cerebral) Involvement in Scleroderma, which does have a small amount on vertigo. I've also found a couple of threads on the subject - Vertigo and Vertigo and Nausea, which I hope you'll find helpful and informative. I would also suggest a visit to your scleroderma expert pretty quick, if you haven't done so already. Kind regards,
  25. The RIG-I pathway is involved in peripheral T cell lymphopenia in patients with dermatomyositis (DM). Our study showed for the first time that negative correlation between the increased RIG-I expression in peripheral T lymphocyte and T cell count in some patients with DM. PubMed, Arthritis Res Ther, 2019 May 29;21(1):131. (Also see Dermatomyositis and Polymyositis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  26. Does anybody know of help available for scleroderma and vertigo? Vertigo has taken over my life and it is horrible! Two fractured skulls and concussions. Broken bones etc. I'm lucky to be alive. 15 years into scleroderma and this has just presented itself. Somewhere on the web while researching I found a site that mentioned vertigo, but the links took me nowhere . Does anybody have any info on this or can point me in the right direction ? Please and thank you . Christina
  27. Common Causes of Pain in Systemic Sclerosis (SSc): Frequency, Severity, and Relationship to Disease Status, Depression, and Quality of Life. The majority of patients with SSc suffer from different types of pain which is associated with more severe disease, depression and poor quality of life. PubMed, Pain Manag Nurs, 05/15/2019. (Also see Pain Management) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  28. Would you like to help scientists find a cure for scleroderma? Dozens of clinical trials for scleroderma and pulmonary hypertension are actively recruiting now. Review them and be sure to ask your scleroderma expert about the ones you are interested in. (Also see Current Clinical Trials and Scleroderma Experts) Posted 07/09/2019.
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