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Shelley Ensz

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Everything posted by Shelley Ensz

  1. We've upgraded and redesigned Sclero Forums so please let us know if you have any trouble accessing or posting in the forums.
  2. Hi Brenda, Welcome to Sclero Forums and thank you for contributing your experience so far with SCL-70 but no symptoms. As it happens, autoimmune thyroid disease is sometimes a sort of gateway to other systemic autoimmune conditions. See Exploring Systemic Autoimmunity in Thyroid Disease Subjects, 2018 Journal of Immunology Research. Also see Autoimmune Thyroid Disease on our main site. On the positive side, if you ever do develop other symptoms, it is likelier that they would take them seriously many years sooner than for others, and thus perhaps sort of n
  3. Hi Jeannie, I'm always thrilled to hear from you! I'm delighted that you are enjoying an abundance of grandchildren and dogs. I'm sorry things are still progressing but also glad you have them treated as good as possible, and still active and making the best of things.
  4. Hi Janet, I'm sorry for your predicament. There's a few things that you may (or may not) find helpful. One is that it is of primary importance to get emotional reactions and depression under as good of control as possible (keep at it with medications, counseling and support groups, etc.) because doctors are under oath to "do no harm" and they often construe that telling a depressed person that they may have a serious disease (especially one for which there are few relevant treatments) may be doing excessive harm. So, it's not unusual for them to patiently wait for th
  5. Hi Bluebell, Welcome to Sclero Forums. You mentioned that the tests showed "positive", but by that do you mean they detected the presence of the antibody, or that the antibody was detected AND was abnormally high? In other words, were those test results flagged as being abnormal? If so, please return to your doctor to get an explanation of your lab results. If it's just that the antibodies were present, but not out of range, that would mean the test results are normal. It's very common for antibodies to show up on blood tests; it is only when they are out of range tha
  6. Hi Lynnann, I'm sorry that both you and your sister have had so many health issues. The tests might help determine a cause, such as scleroderma. Plus who knows, your weight loss may also be due to something else, and it would certainly be urgent to treat, regardless of the diagnosis. Please let us know how things go.
  7. Hi Olimpia, Welcome to Sclero Forums! I'm sorry you have concerns regarding SCL-70. As it happens, about 30% of people with non Hodgkins Lymphoma show a positive ANA, but without it being due to autoimmune disease. The studies about that are over 3 years old, so we won't link to them in the forums, however, you can Google the topic. Perhaps that's it? Or perhaps not. Only your rheumatologist, preferably a scleroderma expert if you are experiencing any symptoms of it, could know for sure. Even then, the illness is diagnosed based on symptoms, not blood work, which i
  8. Jo, thanks for your always relevant and useful news for all of us! I found this article particularly fascinating. I probably shouldn't say this, but I often miss you; sometimes it brings me to tears and I cry. I also hate various stuff. Ugh!!! Okay, this is a poor attempt at humor on a very serious topic -- but I'm very prone to saying "ugh" and now I'm hyper-aware and will likely use it every other word. Ugh!!! Also, it's pretty hard for us not to use such words on this forum, as we're dealing with very serious issues that can evoke strong reactions. So I want to re
  9. Hi Marybeth, As it happens, it is possible to have sinus problems related to scleroderma, according to scleroderma expert Professor Chris Denton of the Royal Free Hospital. Please see How Post Nasal Drip Can Be Related to Scleroderma. That said, treatment for it would likely be the same as treatment for any regular sinus problems. Importantly, a sinus problem would *never* be considered part of the diagnostic criteria for scleroderma, so scleroderma itself is rather a moot point when dealing with your doctors. And it is far more crucial to consider all the most common
  10. Hi Cathy, First of all, we should be celebrating the good news, which is that it sounds like your doctors have already ruled out the very worst causes of chest pain, such as heart or lung troubles. So let's take a deep breath while we all rejoice over that! So now it's down to troubleshooting the lesser causes. See 19 Important Causes of Chest Pain by doctor's Opinion. Given scleroderma, some of the more likely culprits would be costochondritis, heartburn or esophageal spasms, muscle tension, or anxiety. I've had random chest pains for over 20 years. Once
  11. Okay Cde311, we expect you to get such a handle on this that down the road, you'll be able to pitch in and help us all talk other newbies off the cliff! We all know the feeling, and we all need things explained from a variety of sources to start getting the hang of this whole scleroderma misadventure.
  12. Hi Cde311, As it happens, we always recommend that people consult their scleroderma expert regarding diet and lifestyle changes. It's not as straightforward as the internet might suggest and scleroderma can pose complications to standard health advice in many ways. The autoimmune protocol can be difficult or nigh impossible for many people to follow, even for a short time (but I've followed it briefly, here and there). It also might not be necessary or necessarily helpful; so discuss the pros and cons and any concerns with your expert. The thing is, we of
  13. Hi Cde311, Welcome to Sclero Forums. Under the circumstances, it might be pretty good to talk to your doctor. It'd be reasonable to set an appointment to discuss these results and to begin rounding up a scleroderma expert. I know the first impulse most of us have is to be scared out of our wits and want to make it all go away (like with a stem cell transplant). But, trust me, very shortly you'll have a more balanced view, and realize this is far more often a chronic illness that is manageable. Joint pain and GERD are usually especially manageable and perhaps that's a
  14. Hi Anda, Welcome to Sclero Forums. I'm sorry that your mom has Overlap and that she has new symptoms. Please keep in mind that I'm not a doctor and verify everything I say with a reliable medical source. As you may know, scleroderma can affect any part of the body, including the intestines, and slow motility is a very common result of that. She'd be wise to consult a listed scleroderma expert, if possible. Also, motility issues are sometimes caused by medication side effects (pain killers being a very common culprit). See Bowel Dysfunction in Systemic Scl
  15. Hi Tamster, Welcome to Sclero Forums. It sounds like you have a pretty good handle on things already. My tip would be to try to learn how to enjoy and not stress over the medical tests, because they will become your new normal. The vast majority of tests you have taken will turn out with normal results, or they will pick up stray things that eventually turn out to be nothing. The wait between having the tests and getting the results can be excessive and thus nerve-wracking. Your first round of tests is likely to turn out basically fine. At this very early stage, th
  16. Hi Cmfc, Welcome to Sclero Forums. Please keep in mind that I'm not a doctor and have no medical training at all, and that I'm also going into detail for others who may stumble upon this thread with similar issues. Perhaps I should explain that, to the best of my understanding, the shortness of breath that goes along with things like pulmonary fibrosis and pulmonary hypertension typically onset very slowly and so gradually that it is sometimes even hard to recognize. With both, the most common exacerbation would be with exertion; and usually it's just the
  17. Hi Garc, Welcome to Sclero Forums. I may be wrong, I often am, but it sounds like you may be experiencing some bloating. A place to start might be with your primary care doctor, who could assess for the most common causes and perhaps refer you to a gastroenterologist, if necessary.
  18. Hi Helen, Welcome to Sclero Forums. The SCL-75 usually occurs in people who have scleroderma in overlap with polymyositis. Polymyositis is an autoimmune disease that affects the muscles. It's possible that your shortness of breath might be from muscle weakness, rather than fibrosis, etc. Also see: Polymyositis and Dermatomyositis. I think it'd be worthwhile for you to consult a scleroderma expert. They are few and far between but worth tracking down. The great news is that the myositis is more treatable than the scleroderma, and treatments for it may we
  19. Hi Julie, Welcome to Sclero Forums. Even with morphea, it can be beneficial to see a listed scleroderma expert, to make sure you are on the best possible treatment plan. Lately, the first-line treatment for morphea is UVA1 phototherapy. See that and other options at: Morphea Treatments on our main website. If side effects of plaquenil are not life-threatening, many times they can be overcome by taking the daily dose at bedtime, which is what enabled me to stay on it for years. But, you may want to see a scleroderma expert, and inquire about additional trea
  20. Hello Deepak, Welcome to Sclero Forums! Please click on the link for Dr. Patel that you find on this page: https://www.sclero.org/scleroderma/experts/worldwide/a-to-z.html#india We've been trying to find experts and resources for India for years. So please let us know whatever you can find. We have some patient stories from India, which I'm sure you'd like to read. They are listed at: India Patient Stories on Main Site My tip would be to stay actively involved in the forums, saying hello and responding to other people here (even if they have a different t
  21. Hi Pamilla, Burning sensations can occur with the development and progression of scleroderma skin involvement (and of course with other far more common conditions.) So, the sooner you get checked and begin quelling the inflammation, the better!
  22. Hi Doe, I spent a few decades misdiagnosed with fibromyalgia, which turned out to be dermatomyositis (in overlap with scleroderma and many other friends). It's actually called the PM/SCL-70 antibody. I have the PM/SCL-100 antibody. The PM stands for polymyositis -- which is an autoimmune disease that attacks the muscles. It hangs around with dermatomyositis, which attacks both the muscles and the skin. And they all hang with scleroderma on occasion, especially in those with the PM/Scl antibody. Unfortunately, when I first was bedridden and in a wheelchai
  23. Diane, welcome to Sclero Forums! I'm glad you have a UVA1 light box. Please don't use it until you have specific instructions from a board certified dermatologist who specializes in skin diseases. To locate such a doctor, start researching dermatology clinics in your city. You'll notice some focus more on cosmetics, some on cancer, and other doctors (sometimes the whole clinic) focuses more on skin diseases. See if their site lists UVA or UVB therapy; that is a strong clue that you may have the right office. If you do the online legwork of researching for the best doctor, it w
  24. Hi Pamilla, Welcome to Sclero Forums. As it happens, it'd be a great idea for you to see the doctor about this. It could be a run-of-the-mill skin disorder, such as eczema or rosacia, or even skin involvement of scleroderma, or any combination or other ailment or allergic reaction. In the skin tightening phase, I've experienced various degrees of swelling, burning, itching, tightness, tethering, and paresthesia. Once the tightening episode settles down, then the pain and discomfort largely goes away (at least, the burning, itching which was the part that initially ne
  25. Hi LJ, Welcome to Sclero Forums. I'm sorry that you haven't been feeling well and are having such a struggle trying to find answers. A concerning thing to me is that you mention that you are quite depressed, and obviously it's hard to tell which way to turn. You might be right about being depressed, and getting that evaluated and treated would then help clear up some of your symptoms. But swollen glands point more to a CFS/Fibromyalgia angle; and red and disfigured joints point towards arthritis. It'd be important for your doctor(s) to see you and to document the r
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