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Shelley Ensz

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  1. Shelley Ensz

    Watermelon Stomach (GAVE)

    Hi Brigid, Welcome to Sclero Forums! This would be a good forum to get support for GAVE, as it can occur by itself or along with scleroderma. As you know, it's often caused by medications, and sometimes, stopping those medications may even lead to a recovery. If there's no good reason to suspect an underlying disease causing it, such as systemic scleroderma, then you won't need to see a scleroderma expert. However, you'll still want solid information and support, regardless of the cause of your particular case of GAVE, and this is a great place for it. Here's a warm welcoming hug, just for you -- and it will stretch all the way to Ireland!
  2. Shelley Ensz

    New to this, Blood test results.

    Hi Mars, Welcome to Sclero Forums. Wow, you've really been through the mill for years, to get diagnosed! It's really great that you're seeing a scleroderma expert, and reaching out to help others in our forums. We greatly appreciate it!
  3. Shelley Ensz

    Does Anyone Have Sciatica?

    Hi Margie, Welcome to Sclero Forums. I'm sorry you have scleroderma and now sciatica. As it happens, sciatica is pretty common, with or without scleroderma. I've had it for over 20 years now. I tried everything imaginable for it. Lots and lots of physical therapy, exercises, floating, tens units, pain medications, ice packs, cortisone injections, etc. Finally my right thigh went completely numb, which was an amazing relief, and every day I do toe-touches while showering (very carefully) and bend forward as far as I can while sitting down. What's ironic in my case is that at onset, my doctor said it was caused by skin tightening in my lower back, as it was thick, tethered and unpinchable there. But the pain from it was relieved years before my skin softened in that area, so it may have been more just a coincidence. I'm sure it's all still a temporary fix, but it's such a relief after many years of excruciating back spasms and stabbing and burning pain in my thigh. It almost seemed like it was the passage of time that helped most of all. Unfortunately, pain causes muscle tension and muscle tension causes pain -- and breaking that cycle is even harder when we have an emotional reaction to pain, such as hating it or wishing it away, or feeling angry or upset in any way. So another thing I did was focus strongly on relaxation and re-thinking how I was thinking about pain. Things that helped me relax, always helped ease the pain (which I relabeled as "interesting sensations" to help reduce my emotional responses.) I hope your journey to healing is a lot faster than mine was. But at least, trust that there IS a light at the end of this tunnel, and there really can be an interesting life WITH sciatica. And, with scleroderma, too, of course. Meanwhile, here's lots of warm hugs to comfort you. And also see: Scleroderma Skeletal Involvement, on our main site.
  4. Shelley Ensz

    New to this, Blood test results.

    Hi Courty, Welcome to Sclero Forums! Jo gave you excellent advise and resources, as always! The only thing I can add to the discussion is that is it possible to have lupus with anticentromere antibodies. Although it's rare, the clinical course is the same as it is for other lupus-related antibodies. Although we tend to think of diagnosis as being straightforward and easy-breezy, it can be extremely complicated -- especially for those of us whose body has failed to read and follow the directions for the most classic disease presentation. So, get to the real experts to get it sorted out (and even then, I caution that a reliable diagnosis can sometimes take many years.) Here's some warm, welcoming hugs for you.
  5. Shelley Ensz

    Hi there, Diagnosed with Limited Scleroderma.

    Hi Brenda, Welcome to Sclero Forums! As it happens, many years ago they did a clinical trial of oral bovine collagen as a possible treatment for scleroderma. Back then, there was some excitement, hoping that it was a potential cure for scleroderma, which is what makes it still memorable for me. They found it might actually improve skin in late-stage scleroderma, but that was pretty much about it. See our main site, Scleroderma Clinical Trials: Inconclusive or Difficult to Study: Bovine Collagen for Diffuse Scleroderma. In any event, it turns out that injecting collagen is quite different from eating it. As Jo pointed out, injecting collagen may cause a severe allergic reaction in people with connective tissue diseases, such a rheumatoid arthritis or scleroderma. Collagen is a naturally occurring substance in meats. I love to make bone broths, which can contain a lot of collagen, and I find it very soothing for my stomach. Odds are good that you didn't "do" anything at all to "get" scleroderma. Some of us have had some curious environmental exposures that may have triggered it, but very few people can pinpoint an exact cause, and in those cases, it's usually very long term occupational exposure to a toxin, without sufficient protection. Even then, it's extremely hard to prove the connection.
  6. Shelley Ensz

    Scared but relieved. Possible sclero.

    Hi Phoebe, Welcome to Sclero Forums! I'm sorry you have chronic illness and send my best wishes to you. As it happens, anyone can get scleroderma -- newborns to elderly, men and women, all races, any body type; in fact, it occurs in pretty even distribution around the world, except for some clusters that are known or suspected to be caused by genetics (such as the Choctaws in the U.S.) or environment. See Causes of Scleroderma. At this point, you'll probably be interested in our Diagnosis of Scleroderma section, and want to start looking into seeing a listed scleroderma expert, since most rheumatologists may see only one or two cases in their entire career, so they are quite likely to not recognize anything less than glaring advanced scleroderma affecting the hands (which ironically many of us do not have, even though it's the most well-known symptom by far.) Your local internist or rheumatologist can help sort out a referral to a scleroderma center, if that's feasible with your situation and insurance (as many people have to travel out of state to find an expert.)
  7. Shelley Ensz

    Positive ANA with nucleolar pattern

    Hi Wendy, Welcome to Sclero Forums. I'm sorry you have multiple health issues. Since there's a question about scleroderma, you may want to peruse our Diagnosis of Scleroderma resources. A scleroderma expert would be able to assess whether your hardened white patch is due to scleroderma or lichen sclerosus or whatever. Fibromyalgia symptoms are so extensive and can overlap so much with other diseases that it really takes an expert to sort it out.
  8. Hi Tereena, Welcome to Sclero Forums! I'm sorry you have Myeloproliferative Neoplasm and scleroderma. With chronic illness, and especially when we've started a new treatment, it's vital for us to report new or worsened symptoms to our doctors right away. Even with scleroderma or a new medication, it's never okay for us to simply assume that it's either the illness, or medication side effects. The changes might be due to a NEW illness or complication. It *might not be* plaquenil side effects; and even if it was, if you want to stay on the medication, the side effects may need to be treated or the dosage adjusted. With chronic illness, fatigue, mood swings and depression are all extremely common. It could be symptoms of worsening MPN. Or, if MPN is a new diagnosis, then you might be experiencing reactive depression. I've had reactive depression, which is just like regular depression, except that it is brought on by a traumatic event, and it responds very well to talk therapy with emphasis on stress reduction, particularly if it is promptly treated. And if it is a bad reaction to plaquenil, then your doctor may decide you need to discontinue it before things get even worse. The sooner you find out what's going on, for sure, the sooner you can start feeling better again. Please let us know what you find out. Also see our resources for Emotional Adjustment and Scleroderma, and Disease Modifying Anti-Rheumatics.
  9. Please join me in congratulating Jo Frowde on her recent promotion to ISN Secretary of the Board of Directors! On August 19, 2018, Jo Frowde accepted the position of ISN Secretary of the Board of Directors. Jo is also ISN Assistant Webmaster, ISN Sclero Forums Manager and ISN News Director. (Also see ISN: Jo Frowde and How to Volunteer) Jo, we can't possibly thank you enough for your truly major contribution of talent to the ISN. We all appreciate you and your enthusiastic and consistent efforts to continually provide stellar information and support for our worldwide scleroderma community.
  10. Shelley Ensz

    I missed this forum for a while.

    Hi Quiltfairy, It's nice to see you back in action on the forums. I'm sorry you've been going through such a bad spell. Hopefully the new specialist will help!
  11. Shelley Ensz

    Morphea flare up and other symptoms.

    Hi Sara, Welcome to Sclero Forums. As it happens, about 25% of people with morphea develop some symptoms outside of just skin involvement. Only very, very rarely do morphea and systemic scleroderma overlap (about zero to four percent, depending on the study). Read more on our main site at Morphea Scleroderma. About 2% of people with morphea also develop Anticentromere antibodies, and those people are at risk for also developing symptoms of systemic scleroderma. See Diagnosis of Scleroderma. An interesting thing you'll encounter is that many scleroderma experts treat only localized (such as morphea or linear) or only systemic scleroderma (such as limited or diffuse or overlap). If you and your doctors think you might have both, or something in addition to morphea and lichen sclerosus, then you'd want to consult an expert who specializes in both conditions. On our Scleroderma Expert List, each page mentions what type of scleroderma they treat, and whether they treat juveniles or adults, etc. I'm not quite sure why you discontinued treatment just a few months ago and call this a "flare" because it perhaps might best be called a relapse from discontinuing treatment. The steroids might have been masking your hip and joint pain, and indeed, they can even cause bone degeneration. Osteoarthritis (wear and tear) is by far the most common cause of joint pain. Many conditions besides scleroderma can cause intermittent hand swelling, including carpal tunnel syndrome. See What's Causing My Hand Pain? to consider the full range of possibilities. Certainly, it'd be important to sort things out. And remember, it is always easier to prevent morphea plaques than it is to clear them up after they've developed. So do be sure your doctor knows whats occurring right now, in case they want to resume your usual treatment immediately.
  12. Shelley Ensz

    Raynaud's with injuries

    Hi Creleon, You'll probably be quite happy to learn that, to the best of my knowledge (although I am not a doctor and have no medical training at all), scleroderma doesn't cause orange patches; or skin that is purple and orange all the time. The color changes of a Raynaud's attack are temporary, often as little as a few minutes from attack to rewarming, and usually inspired by an identifiable source, such as exposure to temperature changes or extremes, or due to anxiety, or chemicals such as caffeine, nicotine, or other vasoconstrictors. And, I've just never heard of an attack of Raynaud's described as also including patches of orange skin. Red, blue, white, purple -- YES. But orange? No. At least, not for me, that's for sure. The thing with orangeness is that it usually indicates that iron has leaked into the skin, somehow, like with Schamberg disease. Is that a little closer to describing what your sister has? Another article you might like is, Antibody test ‘inappropriate’ without connective tissue symptoms. It says, "The study showed that over 90% of patients referred to a rheumatology clinic following a positive ANA test had no evidence of ANA-associated rheumatic disease." About 15% of people with high positive ANA turn out to be completely healthy; and 35% of seniors have positive ANA. Which of course, raises the question, what else can cause high positive ANA? Positive ANAs can be caused by: medications, old age, genetics, any type of infection, alcoholism, cancer; lung, blood, gastrointestinal and skin diseases. So it becomes important to look at every possible cause (not just connective tissue diseases), and if everything is safely ruled out, then it may come down to a simple family history of rheumatic diseases (genetics). Another way of looking at that is that only around 10% of people with a positive ANA actually have a connective tissue disease. And, a high ANA titre is not indicative of disease or disease ferocity, except in very limited circumstances; it is the other blood tests and associated symptoms that really and truly matter. It's sort of like, positive ANA is not helpful in a vacuum of certain other symptoms or lab tests; it is only helpful when it is considered in light of them. ANA doesn't "cause" illness any more than a parked race car can "cause" death. So far, what you have is a parked race car, which may or may not be related to the skin color changes. It's all quite curious, of course. The ANA in this case might serve as a significant clue, or as a detour. That's why the focus keeps getting put back on the symptoms, despite how badly all we want is answers, fast and straight answers, from the blood tests. It's in the uncertainty that feeds our anxiety, and really, none of us can be blamed for wanting answers . . . fast and and accurate answers!
  13. Shelley Ensz

    Raynaud's with injuries

    Hi Creleon, Here's an article that may help a bit: When do Raynaud symptoms merit a workup for autoimmune rheumatic disease? by Cleveland Clinic Journal of Medicine. It's rather odd that you say her toes never go back to normal. In Raynaud's, there is a return to normal as soon as the attack is over. If that's not happening, she may have acrocyanosis. Acrocyanosis sounds horrible, but it's a benign (harmless) condition caused by poor circulation. It's impossible to tell, of course, whether you are referring to some sort of injuries or to skin ulcers on her toes. Injuries, of course, would not be related to the Raynaud's, but any sort of circulation problem would make healing slower. I can't quite tell what you are referring to, when you say that your doctor talked to you about scleroderma. Was this in the context of concern for yourself, your own symptoms, that cause you to be worried about scleroderma? Or was your doctor referring to your sister potentially having scleroderma, due to Raynaud's and positive ANA? Or, you're worried about having scleroderma because your sister might have it? Whatever it is, let us know, and we'll try to answer more precisely.
  14. Shelley Ensz

    Scary changes to my hands

    Hi Christy, Welcome to Sclero Forums. I'm sorry there are concerns for your daughter's health. Please keep in mind that I'm not a doctor, and have no medical training at all. It's possible that a few of her symptoms may be within the realm of normal, and if any of them can thus be taken off the list of worrisome, it may help her doctors figure it out quicker. For example, although it may very well be new or more prominent for her at the moment, it's normal for fingers to wrinkle when exposed to water. It's actually considered to be an evolutionary advantage, in that it helps us grip things better when they are wet. Skin staying indented after pressing is a common sign of dehydration, and dehydration would also make the wrinkles more prominent. Feeling pain from water exposure, though. That's a little different. It could be that the temperature changes are too fast. To check for that, start water at room temperature. Is that comfortable? If so, then try changing the temperature very slightly, hotter or colder. Is the problem the water, or the temperature of the water, the pressure of the water, or the rapid change in temperature? And, what type of pain is it? How long does it last? How fast does it go away? How does it go away? Importantly, does any part of the skin turn colors, such as dead white, deep dusky blue, dark purple, or bright bright red? If so, the color changes might indicate Raynaud's and that may be the cause of pain. Happily, Mayo Clinic has vascular laboratories where they can test it all out with scientific precision. With scleroderma, it'd be more likely that her fingers would be swelling up like sausages (not shrinking), and the unmistakable color changes would usually be stark enough to garner attention right off the bat. But there are millions of other conditions, including erythromelalgia and even cold dermatographism that may be at play. Post-wedding exhaustion, even depression, is a real thing in and of itself, and it would be made worse by so much concern and so many doctor visits; and also the exhaustion would make the other symptoms seem vastly more significant than they might be when encountered without the fatigue hitching a ride. Altogether, it's great to get checked out by Mayo. It's really great that your daughter has passed the other tests, so far. It's quite possible you'll receive some "happy" answers, meaning, something less than something as potentially serious as scleroderma to deal with. You're doing all the right things. Gather information, get a second opinion, and let the chips fall where they may. This must be interfering with their honeymoon stage. I hope matters get settled soon so the focus can return to them building their new life together. I'm sure you all amply deserve that!
  15. Shelley Ensz

    Cellcept for Sine Scleroderma - Cardiac?

    Just something to note is that they are still actively studying the role of physical activity and exercise in regard to systemic scleroderma. A study from 2010 found that exercise increases inflammation in systemic sclerosis. More recent studies seem to indicate that many people with scleroderma may be able to sustain normal activity and exercise levels, provided they don't have lung involvement. Perhaps the most important thing is to be aware that certain types of exercise, or prolonged exercise, may increase inflammation in scleroderma patients. In my own case, I've found that my ability to tolerate exercise has fluctuated a lot since I became ill. I led an aerobics class and water aerobics class when I got sick, and when my doctor ordered me to stop exercising, a lot of my brain fog, pain, and fatigue cleared up. And here I was, exercising, trying to clear all that up! It was counterintuitive and went against everything I believed in. But at that stage in my illness, I needed rest to recuperate. At other times, with other treatments, and in other stages, I've been able to increase my activity and exercise, up to a certain point, but being greedy by trying to improve too fast is nearly guaranteed to set me back. So I have to settle for smaller increases than I'd like, and also need to be satisfied when I've reached a plateau and not be discouraged by just maintaining, when trying to improve further makes me worse. If you have systemic scleroderma, work with your scleroderma expert -- and listen to your body -- to see how much activity or types of exercise you can do, regularly, to improve your health without worsening it. Obviously, laying in bed 24/7 isn't going to help, anymore than exercising 24/7. Anyway, it's food for thought, especially if you notice significant worsening after prolonged activity or exercise. It might be the inflammation, and modifying your activity and exercise schedule might then be of benefit in managing the disease. Also, a few of us, like me, have overlapping conditions that affect our muscles, so my experience may be a lot different than others.