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Shelley Ensz

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Posts posted by Shelley Ensz

  1. 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. 





  2. 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!



  3. 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. 



  4. 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!



  5. 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. 



  6. Hi Creleon,


    Welcome to Sclero Forums. I'm sorry that you are concerned for your sister. 


    As it happens, Raynaud's can occur by itself or along with MANY other diseases, not just scleroderma, and so can positive ANA.  On average it takes about six years for women to be diagnosed with scleroderma, ten years for Sjogren's, and so on.  Just in general, we are talking about chronic diseases, although of course, in some cases, those diseases may be life threatening, too.  But many of them are very treatable, given all sorts of modern breakthroughs and with more on the horizon every day! 


    It sounds like what you may be dealing with right now is fear of the unknown and of course, the perceived threat of possibly losing your sister, so unexpectedly. The threat of loss invokes a sense of dread and fear and anxiety, in all of us, which we handle with our own collection of coping skills. 


    None of us are doctors or therapists, so we can't directly intervene here.  But I can assure you that what you are going through is entirely normal, and there are ways for you to deal with this successfully and to find ways to be a loving, happy support to your sister.  When caregivers become anxious or depressed, they naturally withdraw to try to protect their emotions. You can help your sister the most right now by figuring out how to quell your emotional reaction, which means developing new skills for becoming resilient. 


    The general rule of thumb they give us is to allow ourselves two weeks from a major stressor (such as this) to return to our usual level of happiness.  By focusing on emotional healing, hobbies, friends, eating, sleeping, reading, studying and especially sports. Odds are, you'll feel much better by then!  But if not, please talk to your own doctor about it. It is extremely common for both patients and caregivers to find they benefit from counseling, medication, meditation, and support groups. 


    Very very few of us have already developed the emotional fortitude to deal with such major threats to our stability, ahead of time. I mean, like, why bother, when life is going along okay enough for us? Once you get your own reaction quelled, THEN you can be the positive and encouraging support that your sister will welcome and appreciate. 


    Happiness is not something that awaits for you, or her, until a diagnosis or treatment is complete, or perfect health is restored.  Happiness can be right here, right now, as you learn to cherish life even more dearly, having become so exquisitely aware that it doesn't last forever, for any of us. 


    You can do this, Creleon.  We will be here for you, and for your sister, too.  And, it's not nearly as bad as it seems by all outward appearances. Find a slogan to rely on, that can lift you up through this.  You'll know your own when you find it. Maybe you already have one. What thought has sustained you during tough times before?  


    I just hate the line, "It is what it is," but frankly, the line has helped me see what is, and not what I horribly imagined it to be, and that has brought me much more acceptance, and peace and awareness that there's only so much I can change.  Whatever brings you peace and joy and comfort, without harming yourself or others, rely on that now. 



  7. Hi Nana,


    Please keep in mind that I'm not a doctor, and have no medical training at all. 


    I may be wrong (I often am!) but it sounded to me as though you were describing morphea scleroderma, with the discolored skin patches. Morphea is a form of localized scleroderma, which is different from systemic scleroderma, in that it primarily affects the skin and not the internal organs. 


    As far as I can tell, you haven't mentioned symptoms of systemic scleroderma, like Raynaud's, pulmonary fibrosis, tight skin on hands or face, heartburn, etc.  See the Systemic Scleroderma Symptom Checklist


    The path forward would probably be to contact a scleroderma expert who specializes in morphea AND systemic.  That way, you can be assured of the proper evaluation and have any concerns about systemic dealt with.  On our expert pages, we list what types of scleroderma they treat.  I'd think that the biopsy results would be enough to get an appointment, but I do not know how to interpret your results, of course. At the very least, a discussion with the center(s) should be enlightening. 



  8. Hi Beckybee,


    Please keep in mind that I have no medical training at all and verify everything I say with a reliable medical source. You know, like, your doctor. 


    It's my understanding that scleroderma is diagnosed based upon symptoms, and not blood work.  The blood work only serves to confirm the clinical diagnosis that was already made; the blood tests themselves do not make the diagnosis. In other words, to the best of my knowledge, it's impossible to be diagnosed with scleroderma based only on a blood test (in the absence of pertinent symptoms.)  And, the Anticentromere antibody is pretty specific to scleroderma, too. 


    About 20% of blood test results are erroneous; plus there are different ways to run these blood tests, and varying levels recognized as positive by different labs.  So it is not the least bit unusual to see changes in antibodies.  Basically, once I was diagnosed, the antibody panels pretty much became a thing of the past because doctors treat the symptoms/illness as it develops and changes, and not the antibodies. 


    I'd also like to warn you -- chin up!  It is entirely normal to have all sorts of differing opinions and diagnoses with scleroderma, some or even much of it depending on the expertise of the doctor.  That's why it is pretty much imperative to see a listed scleroderma expert.  



  9. Hi Kathleen,


    As it happens, as far as I can tell, calcinosis is not a listed side effect of plaquenil.  Here's a list of possible causes of calcinosis.  It would be important for you to have the lesions biopsied (if you have not already had that done) and then have all the "usual suspects" reviewed, to see what is causing it in your case.  Plaquenil might be started for any suspected connective tissue disease, and the calcinosis is very likely due to the underlying disease, and not the medication for it. 


    If it is narrowed down that the lesions are calcinosis and there is no other possible cause, then your doctor may submit a side effects report. If you want, you may also report an event directly to the FDA.  See How Consumers Can Report an Adverse Event or Serious Problem to FDA



  10. Hi Lindsaym,


    Welcome to Sclero Forums.  I'm sorry you have symptoms you are concerned about.  Until you arrange for more health insurance, perhaps you could have this checked at a free clinic


    You might also find some clues in Skin Cysts, Lumps and Bumps.  In particular, lipomas are an extremely common and benign (not harmful) cause of lumps under the skin.  If a lipoma grows very quickly or is painful, then it should be checked out by a doctor.  


    Also see Unexplained Weight Loss by Mayo Clinic, and Parotid Stones.  Parotid stones are fairly common (like 1 in 100 people get them). They are comprised mostly of calcium, but that doesn't mean they are calcinosis, and they are not a symptom of any form of scleroderma; and, salivary stones are not a listed symptom for diagnosis of Sjogren's, either.  I'm not saying you were saying they were, either; that's just information for others who stumble across this thread while investigating parotid stones. 


    One thing we continually address in this forum is anxiety. It can be so much more disabling than any other condition, and of course, it may also cause weight loss, and even be caused or worsened by not having health insurance.  So cut to the chase, list each of your symptoms, and get them checked out all at once.  Likely, you'll be relieved to either find your fears were justified, or not; but either way, you'll have some answers. 





  11. Hi Margaret,


    I'm delighted that Gareth "only" had a virus!  Good spells are certainly something to cherish.  I'm sure the IVIg is making this good stretch possible. Hopefully it will last for a nice long time to come. 


    I'm joining you in the Sclero Happy Dance! 



  12. Hi MeggieBeth,


    You're not alone. We are all capable of manifesting symptoms out of anxiety. Which is one really major reason to get and keep our stress levels under control, so that we don't confuse our illness with our reaction to it.  Often, we are actually an awful lot less sick, than our anxiety thinks we are!  By the same token I might add that often, we are often an awful lot MORE sicker than our family, friends, and doctors think we are.  Its such a dichotomy! 


    Also, anxiety can derail our efforts for a diagnosis, in that, if our emotional reaction is out of bounds, it is very easy for our doctors to chalk up all our symptoms to mental illness or hypochondria. They can even feel obliged to withhold a diagnosis until they believe we are mentally stable enough to handle it, because their very first obligation is to "do no harm".  I was actually shocked when I really grasped that, because I thought, in my naive little way, that their first obligation was to always tell the truth, and to tell it as soon as possible.  It's confounding when they can look at it from the angle that the truth can harm, sometimes. 


    Obviously, if we can't even handle the basic idea of scleroderma, there's no way we'd be able to handle the reality of it. It's ironic, but to handle physical illness, most of us need to develop very strong psychological muscles, and at a time when we also feel the least capable of it.  But, it can be done. And you can do it. It just requires mustering all the resources you can find and making it a priority. 



  13. Hi MeggieBeth,


    Welcome to Sclero Forums.  I'm very sorry you have such health issues right now.  I want to reiterate Jo's advice, because anxiety can be far more devastating than scleroderma, CIDP or any other disease.  The general recommendation is that if we aren't back to our normal, bouncy self within two weeks of a major disruption (such as this), then we should see our primary care doctor for evaluation and possible referral or treatment.


    Basically, all we need to do is further develop our resilience. Definitely indulge in all your usual self-care routines now, just like you are planning! Just beware they might not be sufficient unto themselves at this time, and if they aren't, it merely represents a grand opportunity to learn how to deal even more successfully with stress. 


    The thing about ANY chronic illness is that it can be a tremendous source of ongoing and complicated stress.  So the more adept we are at dealing with those stresses, the better we can manage our health, overall, and the more happiness and joy we can find in our daily life.  Because, importantly, we do not have to be healthy in order to be happy and we do not have to wait until we are diagnosed/treated/healed in order to be happy. 


    You're doing extremely well by seeking solid sources for support and information, and making plans to see a real scleroderma expert.  Other than the arrangements for that, there's not much more you can do, or need to do, besides quelling the anxiety.  It really is whatever it is, already, and no amount of thinking or wishing or dreading or hoping is going to change the matter.  And, along with us, you can get through this, fine and dandy, because we'll be here for you. 



  14. Hi Anne,


    Welcome to Sclero Forums!   Morphea often subsides, even on its own, within 3 to 5 years.  It can recur, but it's not like a chronic illness that is expected to recur.  In about 25% of cases, there might be one or two other symptoms along with the morphea. 


    You'd probably like the page on our main site about Conditions Associated with Morphea


    Osteoarthritis is caused by overuse and aging and is by far the most common type of arthritis.  So you might be questioning whether your arthritis diagnosis is correct.  To look into that, see Diagnosing Arthritis by the Arthritis Foundation.  If your symptoms fit the inflammatory arthritis profile better, then you should seek a referral to a rheumatologist.  If it's deemed to be inflammatory arthritis, then you may want to see a scleroderma expert, but that's highly unlikely without other bothersome symptoms, such as Raynaud's, tight skin, etc.  See Diagnosis of Scleroderma


    I'm only a patient with no medical training at all, but it's my understanding that follow-up would not be required for morphea that is in remission and without any recurrence or complications, beyond the usual skin surveillance by you, your primary doctor and/or your dermatologist. 



  15. Hi Tate,


    Welcome to Sclero Forums! 


    There's one aspect of your post missing. That is, scleroderma is never diagnosed based only on blood work.  The diagnosis depends upon the presence of certain symptoms or a constellation of symptoms, which I presume were the reasons you had the blood test run in the first place.


    With the right symptoms, you can be diagnosed with scleroderma without any positive blood work at all.  By the same token, you cannot be "undiagnosed" with scleroderma just because an antibody returns to normal.  Many people experience changes in their antibodies over time, if their doctors persist in testing for them.  Perhaps its good if antibodies return to normal, or interesting if another antibody suddenly shows up, but the real question is whether your overall health is worsening, staying the same, or getting better. 


    For me, I wouldn't read too much into antibodies. They can help during the diagnosis stage, but most of them don't directly tie in with the disease or help with managing the progression. It's possible to die of scleroderma while having entirely normal antibodies; and it's possible to live with scleroderma for many decades despite very impressive antibodies.


    You haven't mentioned your symptoms worsening, so I may presume they are stable. And with your treatment plus a bit of luck too, maybe they will stay that way! 



  16. Hi Hanlucks,


    Welcome to Sclero Forums!  I'm sorry you have Hashimoto's and concerning blood work and swollen joints.  I'd urge you not to panic over scleroderma, just yet!  Sometimes Hashimoto's can cause a positive ANA, although no telling if it's the sort you have.  Hashimoto's can also cause swollen joints, from slow metabolism.  So, right now, you might be in the clear!  It's way too early to panic over scleroderma, even if you actually had scleroderma, it'd be on the extremely mild side at the moment, from the general sounds of things. 


    Some phrases that helped me in the early days were, "Don't trouble trouble until trouble troubles you!" (but you could reasonably argue, this is already some sort of trouble) and "It is what it is."  I hate the line, "It is what it is," but I think the point of it is that since it is whatever it is, whatever I think about it surely isn't going to change it much, one way or another.  So it reduces my temptation to endlessly dwell on the subject (aka rumination which is a fantastic precursor to anxiety and depression, if not nipped in the bud in the early stages.)


    See what your rheumatologist says. And if there's still any remaining doubt about scleroderma, see a listed scleroderma expert.  Okay, now you have a support group -- and a plan of action. You can do this thing!  It won't be as bad as it appears right now.  


    But, that said, we all do know what that initial panic is like.  Pretty much we've all been there, done that, and wish we hadn't strung ourselves out over it.  Yes, that's my biggest regret in what I've been through, is the pre-stressing before knowing for sure what I was dealing with.  It's a trick to not do that, when it's our very own health and well being that is in question! 




  17. Hi Siswithsoul,


    Welcome to Sclero Forums!  I may be wrong (I often am!) and I have no medical training at all. But you might be tending to the lupus-y side of things; and SCL-70 is positive in lupus sometimes, as well as scleroderma. 


    Generally speaking, the sun sensitivity would be much more of a lupus thing, and about 25% of SLE patients have the SCL-70 antibody.  I'm certainly not saying that's the case, but I am pointing it out for others who hit this thread with an SCL-70 question.  The two illnesses are very close, so it's not unheard of for many of us to be diagnosed wrongly with one or the other,  or even to have them in overlap. 



  18. Welcome to Sclero Forums.  I'm sorry you've had such a runaround with your healthcare. Unfortunately autoimmune diseases can be extremely hard to properly diagnose, or even to rule out.  I've known people who were following by a rheumatologist for ten years before finally being given the all-clear.  I can't even imagine being so worried for so long about what turns out to be such a huge pile of nothing. But, autoimmune ailments can wax and wane, even clear up on their own, sometimes, which just adds to the overall confusion.


    I'm with Jo. Please work with your primary doctor to see about seeing a real scleroderma expert, or do the Mayo thing, or even both. 




  19. Hi Deanne,


    Welcome to Sclero Forums!   


    The place to start would be with your primary care physician, who could then perhaps refer you to the appropriate gastroenterologist, or other specialist, in your area (if it is necessary).