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  2. In Loving Memory of Lorraine Wempner, the International Scleroderma Network thanks Paul Wempner for his kind and generous donation to tackle scleroderma. Posted 11/13/2019. (Also see: ISN News) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Stroke recovery clue from patient walking speed. World-leading research is helping scientists find new ways of trying to help younger people who have had a stroke get back to work. BBC Health News, 10/28/2019. (Also see Cardiac (Heart) Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  4. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 11/14/2019.
  5. Hi Dorene, Welcome to these forums! I've included a link to our medical page on Raynaud's, which I hope you'll find helpful and informative. Your doctor is really the best person to advise you about the treatment and prevention of Raynaud's. Kind regards,
  6. I was diagnosed with major depression, severe anxiety and OCD back in 2002. I lost interest in computers, not sleeping and felt terrible, life was awful. After being put on Remeron, that drug saved me. I could sleep 8 hours and I was always hungry. I gained a pile of weight on that drug, but I didn't care, it made me feel better and doctors all said I need more meat on my bones. Now the meds don't work anymore and I am seeing a new doctor in Jan 2020 for new meds. I think my depression may be at work here affecting my sleep. Just a gut feeling. I have no lost interest in computers, that's my joy in life.
  7. In June/July?part of Aug 2019 I was walking up to 3-4 KMs a day, no problems. When I got sick I was so weak walking was hard. After I was better, I developed a bad cough that I picked up in the hospital. Then I started to see my walking distance diminished substantially. Now I walk around the block thats only .3 KM. I am winded. There is something wrong with my lungs. Went for the test today and one thing that's going to make a capacity reading accurate, is my weight. Last time I had one done I was 170, now I am 128. I was 170 because of antidepressants causing me to gain weight. I have been on them since 2002. Before that I was always 130-135 pounds. I should have told that to the tech that my actual weight should be 130-135. I am losing muscle mass now, this weight loss is crazy.
  8. Hi Doreen, just try to keep your hands warm. I wear thermal lined leather gloves when I go out in the cold, but keeping your hands in your pockets can work well too. Just a minute or two in the cold and it can take ages for my fingers to warm back up. I also find that if I keep the rest of my body warm it seems to help my hands too. In winter I wear a a pair of thermal socks and a sports snood as well as a warm hat. Sometimes I will make an excuse to go to the loo just so as I can dip my hands in a bowl of hot water and those warm air hand driers can be a blessing on a cold day (I even use them to warm my gloves up before putting them back on.) You can also buy battery heated gloves although I haven't tried those yet.
  9. Last week
  10. I have not been diagnosed with Raynaud's, but from my own research I believe that I do have it. Normally my fingers turn white when I am cold then back to normal within a couple of minutes. The current episode I am having now but has lasted for 3 days now and is very painful. The increased pain and length has me very concerned. Waiting on health insurance before I can see a doctor. Any advice to help reduce my pain . Thanks Dorene.
  11. Treatment Failures of Direct Oral Anticoagulants (DOACs). Our analysis illustrates that DOACs may fail in the setting of Food and Drug Administration and non-Food and Drug Administration- approved indications. PubMed, Am J Ther, 10/09/2019. (Also see Antiphospholipid Syndrome) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  12. Hi missyquack. Springfield has a scleroderma group. I haven't looked into it because I may have nothing, but I did see they said something about St Louis. Other than that, best I can find from this website is Chicago or Dallas. Warmer in Dallas lol.
  13. Effect of Impairment-Oriented and Function-Oriented Exercises on Mouth Function in Subjects with Systemic Sclerosis. The results of this study suggest that rehabilitation appears to be useful in reducing tongue and lip impairments and in improving oral functions in subjects with scleroderma. PubMed, Folia Phoniatr Logop, 2019 Sep 24:1-13. (Also see Microstomia) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  14. The International Scleroderma Network thanks Network for Good donors for their support! Posted 11/12/2019.
  15. Joelf


    Hi Ronald, Like you, I've always found that my lungs tend to hurt a bit after a lung function test. Unfortunately, I can't really reassure you about the result of your PFT's, but I would suspect that getting very anxious about them is not going to help you. With a chronic illness such as scleroderma, it's normal to experience depression and anxiety along with illness and so it might be beneficial for you to ask your primary care doctor for a referral for counselling if you're finding your health issues are difficult to deal with. Kind regards,
  16. Hi MissyQuack, Welcome to these forums! I'm sorry that you haven't been able to find a listed scleroderma expert , but we have found that some of our members do have to travel out of state to find one. Failing that, I would advise you to try and find the very best rheumatologist that you can. Kind regards,
  17. Hi Ronald, When I was first diagnosed, the aches, pains and stiffness were so bad, I was taking little exercise and having sleep problems. When I started to fight back, increase my fitness and force myself to exercise more, my sleep improved considerably. It was a painful process, but one I am glad I put myself through. I normally sleep well, so long as I have been for a walk or done some DIY around the house or for one of my kids. If not, a large glass of red before going to bed usually does the trick ☺️ Increased physical activity may also improve your lung function, though you may, like me need to build up gradually. A sleep specialist told me that more human interaction also tires the mind and helps you to sleep. If you are not getting much of this it might be worthwhile trying to spend a bit more time talking to people.
  18. Missouri man, I also live in Missouri. I have had my general practice provider monitor my Raynaud's, since at the time (I've had it for 16 years) - it was only that. I live near Kansas City and I have learned from friends that the rheumatologists here in the area leave a lot to be desired in regard to Sclero (all types). Please let me know if you (or anyone else for that matter) in the KC area have had a good experience with a specific doctor. Otherwise, I am not opposed to traveling to find better alternatives outside of the area. I hope you get some answers - I feel like this disease is like wack-a-mole. By the time you are narrowing down the underlying cause for one organ or system, it disappears and then a new one pops up when you least expect it!
  19. I just seen on my digital ulcers post I was complaining of sleep problems back on Sept 26, I had no idea they have been with me that long. Wow. I guess that is not new but the panic attacks are. Got Xanax for panic. But they don't like to give you very much.
  20. I have to go for a pulmonary function test on Wed 13th and I am really worried. Last time I went was little over 3 years ago and I was at 42% lung capacity. My doctor told me PF and chest XRay every 3 months. I am really worried about the test, my lungs always hurt afterwards from the forceful breathing and I am worried about the capacity being a lot lower. I know it is, as when I walk I get short of breath, in addition I just started getting panic attacks 3 weeks ago, so if it's not one thing it's another. They are really affecting my sleep, I can fall asleep okay but I can not stay asleep, last night was good I got 4 hours, the night before that 2 hours and 2.5 hours bed rest (no sleep). So averaging 3-4 hours sleep everyday. Any help would be appreciated. My doctor knows all of this.
  21. Even babies 'understand concept of counting'. Infants as young as 14 months can understand the concept of counting long before they learn the true meaning of "one, two, three", scientists say. BBC Health News, 10/26/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  22. Hi Missouri man, Thanks for updating us and I'm glad that some of your blood tests are not as bad as you feared. You may find that things will stabilise and please let us know how you get on. Kind regards,
  23. Well, I didn't die of pain like I was afraid of after stopping the over the counter medicine I was taking that was financially breaking us. I'm just pretty miserable but I can still do what I need to do. Just very slowly. The same day I stopped I did get my primary care doctor to prescribe me gabapentin because I have some terrible peripheral neuropathy going on and I definitely can't live with that. What blood tests that have come back so far look good for the basic stuff. CRP is still pretty high and my vitamin D was super low again, so I'm dealing with that. Chest xray came back normal. so I'm basically waiting for the autoimmune parts of the blood test. I'm just going to keep on keeping on and reading here. Take care everyone and I will update if I have any changes or questions.
  24. Celiac Disease (CD) and the Microbiome. This review is aimed at summarizing both pre-clinical and clinical evidence addressing the relationship between the intestinal microbiome and CD. PubMed, Nutrients, 2019 Oct 8;11(10). (Also see Celiac Disease) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  25. 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 11/09/2019.
  26. Individuals With Scleroderma May Have Increased Risk of Sleep-Disordered Breathing. In our cohort, approximately one-third of individuals with scleroderma had evidence of sleep-disordered breathing. PubMed, J Clin Sleep Med, 10/09/2019. (Also see Sleep Disorders) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  27. Hi Jacob, I am a 23 year old female with the same antibodies and asymptomatic! I figured all this out about 10 months ago, and I'm still fine. Since your GERD was already present for many years, I doubt it relates to the antibodies. My mom has terrible GERD - so that can be a genetic thing. I also run a lot, eat really healthy, and what not. I would suggest we stay proactive with our health and not worry too much(even though it can be hard) because we still have a nice long life ahead! I read alot on ACA --- it can occur in individuals with Lupus or other diseases - and sometimes nothing can ever arise from them. Hope all is well!
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