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  1. Today
  2. Can a Nice Doctor Make Treatments More Effective? Having a doctor who is warm and reassuring actually improves your health and can make a difference for health outcomes. New York Times, 01/22/2019. (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.
  3. Yesterday
  4. Association of patterns of moderate–to–vigorous physical activity (MVPA) bouts with pain, physical fatigue and disease severity in women with fibromyalgia: the al–Ándalus project. The results suggest that longer bouts of continuous MVPA are associated with better symptoms profile in this population, which needs to be corroborated in longitudinal research. PubMed, Arch Phys Med Rehabil, 01/05/2019. (Also see Treatments for Fibromyalgia) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  5. Last week
  6. Ulnar Artery Occlusion (UAO) and severity markers of vasculopathy in Systemic sclerosis (SSc): a multicenter cross–sectional study. UAO may represent a relevant severity marker of the vasculopathy in SSc. PubMed, Arthritis Rheumatol, 12/15/2018. (Also see Vascular Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  7. Joelf

    En Coup De Sabre Inquiry

    Hi Ben, Welcome to these forums! I'm sorry to hear that you're feeling concerned that you may be developing en coup de sabre (ECDS). En Coup de Sabre is a term used when linear scleroderma affects the forehead. It appears as an indented, vertical, colourless, line of skin on the forehead. Of course it is possible that the indent you describe is the beginning of ECDS, but the best person to advise you is your primary doctor, with a view to a referral to a listed scleroderma expert/dermatologist, should this prove to be the case. We do have some useful images in our Photo Gallery, kindly posted by one of our members, Ranchosteve, which may be of help to you, but the bottom line is that you should really obtain expert advice about this worrying symptom from a medical professional. We also have another thread on En Coup De Sabre, which I hope you'll find interesting. Kind regards,
  8. Scientists discover cocktail of cancer medication and plant–based supplement could halt body's decline. An anti–ageing drug may be on the horizon, research suggests, as scientists have discovered a drug cocktail that clears senescent – or 'zombie' – cells from the body. Mail Online, 01/09/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  9. Hello and thanks for reading this, My name is Ben and I have recently noticed a small indent running vertically from hairline down to the medial side of my left eyebrow. The indent moves with the skin. Is this characteristic of ECDS? It is very subtle, so subtle that I cannot tell if it is just part of my normal anatomy. When I examine my forehead, I can feel other groove like structures, but my familiarity with ECDS frightened me enough to present this to the community. Does ECDS create indentation of the bone or of the skin? How quickly does the groove typically grow? Thanks for the help.
  10. The role of human herpes virus-6 (HHV-6) and human herpes virus-7 (HHV-7) infections in the development of fibromyalgia. No difference was found between detection frequency of persistent HHV-6 and HHV-7 infection between FM patients and the control group. PubMed, J Neurovirol, 01/07/2019. (Also see Fibromyalgia) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  11. The International Scleroderma Network thanks Jack and Elizabeth Lewis for their monthly pledge support! Posted 02/16/2019.
  12. Phase 2a Trial Will Evaluate GLPG1690 in Diffuse Cutaneous Scleroderma. A Phase 2a clinical trial will test the investigational therapy GLPG1690 in patients with diffuse cutaneous scleroderma. Scleroderma News, 01/10/2019. (Also see Clinical Trials) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  13. Margaret

    Barefut's Blog: February 14th 2019.

    LOL - I'm sure living in NW Washington doesn't help any!!! You guys have had a horrible winter - nothing but rain or snow, right? I did buy Gareth one of the sunlamps, for him to use when sitting and watching TV - I wouldn't know if it helps him any, but I like using it!!! M
  14. Taking an aspirin each day does more HARM than good for healthy middle-aged adults. A major new study concludes the risk of major internal bleeding significantly outweighs the benefit of aspirin among those with no history of heart disease. Mail Online, 01/22/2019. (Also see NSAIDs) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  15. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 02/14/2019.
  16. barefut

    Barefut's Blog: February 14th 2019.

    Thank you Margaret, and so good to connect with you again! I hope Gareth is doing well. I recently started a new anti depressant which is supposed to help with my fibromyalgia too and I believe it is helping for both. I started on low dose so am going to kick it up a notch now. I am feeling better this morning. Taking life one day at a time :) Love and Hugs! Barefut
  17. Margaret

    Barefut's Blog: February 14th 2019.

    Oh, Barefut - to fill so bummed on Valentine's day. I wish I was near to you to give you a hug and help out. Gareth, too, suffers from depression, brought on by the scleroderma. Perhaps, it's time for a change in depression meds? I once had a doctor tell me the reason there are so many depression meds is because many are tweaked, just a notch, for each of the chemical changes that may be occurring in the brain. Relax and be at peace with your *I don't care day* Margaret
  18. Here's an extract from Barefut's latest blog: February 14th 2019 I'm tired. So tired. Tired of nausea, of living in the bathroom, of pain, of this dreary weather. Tired of being tired. Tired of scleroderma. Today I gave up. I let scleroderma win. And it felt good. Sometimes I just don't have any fight in me. Some warrior I am. I don't even have the energy to be angry. And you know what? I don't care. At least for today, I don't care........... Read More! We have another thought provoking and interesting blog for everyone to enjoy.
  19. barefut

    Just for Today

    I'm tired. So tired. Tired of nausea, of living in the bathroom, of pain, of this dreary weather. Tired of being tired. Tired of scleroderma. Today I gave up. I let scleroderma win. And it felt good. Sometimes I just don't have any fight in me. Some warrior I am. I don't even have the energy to be angry. And you know what? I don't care. At least for today, I don't care. Sometimes we need a break and we never get one from Scleroderma but at least we can give ourselves a break from fighting. It's exhausting. Physically, mentally and emotionally exhausting. So today I surrendered and just sat in my recliner all day, staring at the walls, napping, and staring at the walls some more. It's called depression. I take medication for it but it's still always there, lurking in the shadows, waiting for a chance to jump out and take over mind and body, leaving me in a near catatonic state. I become one with the chair upon which I sit. A piece of furniture. At least for today. Because like depression, optimism and hope are always there too. Lurking in the shadows, waiting for their chance to jump out and strangle depression. At least for a day. Probably the hardest thing I've had to do in fighting scleroderma, is fight the depression that goes with it. To tell yourself, in your darkest hour, that tomorrow is another day and you won't feel like this forever, takes faith. And my faith comes in knowing that I've been here before and I've survived. Time and time again, I've survived days of despair. And I remember what optimism and hope feel like. Even though they seem so far away right now. Tomorrow is another day. But for today, I let scleroderma, and depression, win. Because sometimes we need a break from fighting. And it's okay to surrender - to rest your body, mind and spirit - until optimism and hope come out of the shadows to help you fight - and win again.
  20. Earlier
  21. Factors associated with receiving bone mineral density (BMD) screening among people with multiple sclerosis (MS). Factors known to be associated with low BMD were associated with BMD screening in people with MS, but a clinically meaningful proportion of individuals with MS who have low bone mass may be missed. PubMed, Mult Scler Relat Disord, 2019 Jan 8;28:305-308. (Also see Multiple Sclerosis and Osteoporosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  22. Performance of candidate serum biomarkers for systemic sclerosis–interstitial lung disease (SSc–ILD). Our results show that lung–epithelial–derived surfactant protein is a relevant diagnostic biomarker of SSc-ILD, whereas glycoprotein Krebs von den Lungen-6 could assess lung fibrosis severity. PubMed, Arthritis Rheumatol, 01/09/2019. (Also see Severity and Prognosis for Scleroderma Pulmonary Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  23. Joelf

    Since 2012 no one will listen.

    Hi No1willisten, I would certainly suggest that you go back to your primary care doctor and I've included a link to our medical page on Common Medical Tests for Scleroderma, which may be of use to you. Unfortunately, autoimmune problems are notoriously difficult to diagnose and can take a long time to resolve (the average time to receive a diagnosis is, I believe, six years.) As you have no medical specialists in your area, then you probably will need to go out of state in order to obtain a consultation with an expert. Kind regards,
  24. No1willlstn53

    Since 2012 no one will listen.

    Thank you. My recent sick feeling sent me to ER and they CAT scanned my clavicle. A hard tissue not cyst or tumor, similar to calcium deposit but not that or fatty tissue. But like leather under skin is the best description the doctor could give. All I can do is get my Primary care to refer me. I live in Las Vegas; I do not even have a osteopathic Dr. in our health care provider. Like I said it is going to be a long haul. Are there any blood tests my primary care can have done to at least look for sclero? I will even go out of state if the blood tests show positive results to get more answers. Not knowing what has caused the hard tissue on the clavicle near my throat plus aching joints and pockets of muscle / pieces of tension pain in or under my skin, like mini isolated cramp. I will be 53 this March; I hope I will know something by then - thank you.
  25. Joelf

    Since 2012 no one will listen.

    Hi No1willisten, Welcome to these forums! I'm sorry to hear that you're suffering with unpleasant symptoms, although the actual nature of your query is not very clear from your post. I assume that you're feeling concerned that you may have an autoimmune disease, which may of course be possible, but the symptoms you describe could easily relate to any number of health problems and are not particularly typical of scleroderma. Although you don't appear to have had much luck with doctors, nevertheless, I would suggest you go back to your primary doctor again, with a view to obtaining a referral, if necessary, to a specialist consultant, who may be able to help you further. Please note that I have no medical training and so therefore it's not possible for me to hazard a guess as to the nature of your illness, or the reason you're experiencing the symptoms you describe. The best person to advise you is a qualified medical practitioner. Kind regards,
  26. To Fight Fatty Liver, Avoid Sugary Foods and Drinks. Children with fatty liver disease sharply reduced the amount of fat and inflammation in their livers by cutting soft drinks, fruit juices and foods with added sugars. New York Times, 01/22/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  27. No1willlstn53

    Since 2012 no one will listen.

    No1willisten, I think I am in for a long haul getting anyone to do the right tests. The medical care here where I live is very restricted. Seems no one wants to be involved with or have any kinda real concerns . I know my own body and something has not been right since 2012. Now I have a growth on my clavicle near my throat; not a tumor not a cyst, it is between bone and skin causing tissue to harden and separate. Oval-ish in shape and kinda semi flat but big enough to feel and is tender when pressed on. I have red dots appearing all around my upper chest area and new ones on my arms. I recently felt really ill and had to call out sick from work. I have a twitch that has last days off and on to my left eye and since this last episode headache, swelling of joints and a lot of back and joint pains.
  28. Hi Mamaof3, Welcome to these forums! I'm very sorry to hear that you've recently lost your husband and send my best wishes and condolences to you. I can understand how worried and concerned you're feeling about your health problems, especially with such a young family to consider. Although the symptoms you describe could possibly relate to scleroderma, they could equally relate to any number of health problems, some of which may be serious or not. Please note that I have no medical training and so therefore it's not possible for me to hazard a guess as to the nature of your illness. Unfortunately googling your symptoms can be counter productive and can only cause you more worry and concern, so I would certainly not recommend that course of action (been there - done that! ) The only person that can really advise you is your rheumatologist and should he consider it necessary, then we do suggest that you consult a listed scleroderma expert. Regarding the relevance of your blood tests, please see our sticky thread here. Obviously some of the symptoms you're experiencing can be serious, but it's entirely possible that you may be jumping the gun and worrying unnecessarily; I do hope so. I would emphasise that at this stage it is almost impossible to guess your prognosis and although I realise that you are desperately seeking some sort of reassurance, I'm afraid you will have to wait until your rheumatologist's appointment for any further help and advice. Please do post again and let us know how you get on with your appointment. Kind regards,
  29. Prevalence of fatigue and its association with clinical features in progressive and non–progressive forms of Multiple Sclerosis. Fatigue was more prevalent amongst participants with progressive MS and higher fatigue severity and impact were associated with greater physical, cognitive, and psychological impairment. PubMed, Mult Scler Relat Disord, 2019 Jan 3;28:276-282. (Also see Multiple Sclerosis and Fatigue) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
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