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Shelley Ensz

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Posts posted by Shelley Ensz

  1. Hi 1982,


    Welcome to Sclero Forums.  I'm sorry you're dealing with symptoms and having trouble getting them sorted out.


    I may be wrong, I often am, but it seems to me that a rheumatology consult would be a reasonable request, with positive antibodies and a collection of symptoms over the course of years. I mean, someone should take a look at it, you'd think, to see whether an autoimmune process is going on. 


    Anticentromere antibodies can also occur in lupus, and that could also explain no skin involvement or other overt scleroderma symptoms (like pulmonary fibrosis). Focusing on scleroderma so early in the game could be detrimental and might be what you're up against right now.  Or, they might be figuring there's nothing going on that would require special treatment, even if you did have this that or the other underlying condition.


    For a path forward, it looks to me like your only option is to change primary care providers. If possible, you might want to see if you can establish primary care with a board certified internist who has a solid background.  Like, try to find the one in your area with the most experience.  The problem is, primary care doctors are accustomed to dealing with the usual issues.  And, it's possible you might have an autoimmune issue. Internists are more geared towards dealing with complex and chronic illnesses; and would more likely be a rheumatology referral resource for you.


    One of my surgeons insists that everyone should go to a new primary care doctor each year, just a matter of course, simply because: fresh set of eyes.  Of course, if your doctor is terrific and you know your care is top of the line and you have no unresolved health issues, then stick with what you've got.


    But how could you possibly be content, having health issues that should by all rights be reviewed thoughtfully in light of positive antibodies.  Sure, it might still take ages for accurate diagnosis as some things just develop slowly -- but still, wouldn't you feel better if your case had a bit more thorough review?





  2. What a nice discovery, Quiltfairy. Thank you for sharing that with us! 


    I think your double-layer plan is exceptional.


    I found years ago that I love gloves but get more Raynaud's with them; mittens keep my hands warmer.  It never crossed my mind (until now; so you get all the credit for this) to wear mittens over gloves to get the very best of both worlds.



  3. Hi Marybeth,


    Welcome to Sclero Forums!  I'm sorry you've had so many health issues and a hazy diagnosis.  Like Jo said, it's an average of six years for a diagnosis of systemic scleroderma, so it's not the least bit unusual to have many more questions than answers for the first half decade or so.  Unless this is just "one of those things" that manages to go away on its own, odds are you may still be dealing with some symptoms when you retire.  So it sounds like you should/could perhaps adjust your retirement plans, depending on how things are going to shake out.


    For what it's worth -- IF you have any flexibility in your plans -- my input would be to try to move within 10 minutes of a major medical center, preferably one with the highest quality ratings in the area.  Then make sure that your insurance allows out of state consults, so that you can still see whatever rheumatology expert you end up with (whether it's lupus or scleroderma or Sjogren's or whatever).


    My reasoning is that scleroderma is most typically a chronic disease. But it can occasionally cause problems that may require emergency care -- and being out in the middle of nowhere, without fast access to critical care, could be an adverse situation.


    I live within 10 minutes of a decent hospital.  The nearness has saved my life at least once. If you're going to be in a more rural area, and there's no fixing that, then accept that you might lose out in the event of an emergency -- you, and all your neighbors too -- but in the meantime you can focus on how the reduced stress, easier lifestyle, less traffic, fewer responsibilities, better chance to rest and eat right, may help your health just as much if not more than the fancy big-city life.


    In essence, think about reducing current stress by sorting out a decision-making tree for retirement plans versus health; or, health and enjoyment.


    Getting evaluated at an expert center could help, too. It might still be too early for them to identify scleroderma, or it's many friends, but it could get you in the loop for regular follow-ups that would help you, down the road.



  4. Hi Moonchild,


    Welcome to Sclero Forums.  I'm sorry you have concerns about scleroderma and test results.  Your doctor is going to have to explain the test results as they interpret them in your particular case.  For scleroderma diagnosis, the symptoms weigh more than the blood work.


    I know it seems like "forever" to wait for an appointment when you have pressing questions!  If you're having trouble coping with the stress of it, let your primary care doctor know.  Many of us needed counseling and/or medication to make a good adjustment to chronic illness.  In the meantime, remember, we are here for you.



  5. Hi Randicats,


    Welcome to Sclero Forums!  Please keep in mind that I have no medical training at all, and verify everything I say with a reliable medical source.  As I understand it, in addition to hives on hands, which it might well be, there are conditions similar to Raynaud's that could also be considered, such as erythromelalgia and dyshidrotic eczema.


    I like the advice in this NORD article on Erythromelalgia, in the Diagnosis section. They suggest taking pictures of flares, and scheduling an exam late in the day.  The doctor might try putting your hands in hot water for half an hour, to provoke it. 


    Generically speaking, with Raynaud's you'd likely notice your fingers turning a dead, waxy white or a very dark dusky blue.  You'd clearly notice that the circulation was impaired.  And then it might turn red upon re-warming. But, Raynaud's rewarming doesn't typically cause itching and blisters. And you're not reporting the white/blue phase or consistent results with exposure to cold. 


    I may be wrong, I often am, but I think most of us with Raynaud's could purposefully bring on an attack by leaving our bare hands in the freezer for a very short while; and in fact one quick test for it is for the doctor to dunk your hands in ice water.


    In your future, I see perhaps some photos, water dunking, and another doctor visit or two, to nail this down to your complete satisfaction.


    Please keep in touch and let us know what you find out about this.

  6. Jo, we are very excited to have you join the ISN Board of Directors! 


    As many of you here know, Jo has been an ISN volunteer since 2010.  She has steadily expanded her roles within our organization, as she is always eager to tackle new challenges.  We are thrilled with the expertise she will bring to the board, including vast knowledge of ISN processes, policies, and procedures that enable us to tackle scleroderma on all fronts.


    I'm throwing a Sclero Happy Dance to celebrate!



  7. Hi Pico,


    Welcome to Sclero Forums!  I'm sorry you have ulcers on your fingertips.  Your doctor needs to examine your ulcers and tell you how to treat them.  We have a section that lists the various options, see Digital Ulcer Treatments.


    Many of us have found it helpful to become experts in trying to avoid digital ulcers in the first place.  It's not entirely foolproof, but it does help to do everything possible to avoid attacks of Raynaud's.  One rule of thumb to keep in mind with ulcers is that if they are not healing, it means they are getting worse!  And this is definitely something to be discussing with your scleroderma expert.

  8. Hi Steff,


    Welcome to Sclero Forums! 


    Congratulations on quitting smoking, that is one of the very best possible things you can do to improve your odds of living longer and better with scleroderma.  I know what a truly major achievement it is to quit smoking (I rate it as the hardest thing I've ever done in my life), so I'm throwing my own Sclero Happy Dance for you! :happy-dance-line::happy-dance-birds::happy-dance-line:


    Please see your doctor about your leg swelling. There are two different types of edema (swelling): pitting and nonpitting.  Pitting means if you poke the swollen part with your finger, it stays indented.  With nonpitting, it just pops straight back again.


    Pitting edema can be caused by things like heart disease; nonpitting is often caused by lymphedema. Your doctor can figure out which type you have and with any luck devise a way to deal with it.  Also, be sure to review your medications.  (I swell up like a balloon on Norvasc, and even ibuprofen.)


    Please let us know what you find out from your doctor, too.



  9. Susil, welcome to Sclero Forums!  I'm very sorry that you have a painful digital ulcer.  Please try to see a listed scleroderma expert, from the link that Jo gave you. Even if that's not possible, please keep going back to your doctor until it resolves.  See if there are any "wound treatment centers" in your area, as those centers specialize in the treatment of wounds.  See if there is a larger medical center or university hospital that you could go to.


    The thing with digital ulcers is, if they are not healing, then they are getting worse. With scleroderma, digital ulcers can lead to amputations. Everything and anything that helps improve circulation may help assist in healing. Which means removing all sources of vasoconstrictors, such as caffeine, nicotine, alcohol, chocolate.  Staying warm from head to toe is critically important.  (Also see Raynaud's Prevention and Treatments for Digital Ulcers)


    Iloprost side effects can be very uncomfortable, but often they are treatable (such as anti nausea or anti diarrhea medications) and for most of us, preferable to gangrene/amputation.  There are also many other treatments! It can be very painful and unpleasant to heal a digital ulcer.   Please let us know how you are doing, and what steps you are taking to encourage the healing process.



  10. Hi Ronald,


    Please bear in mind that I'm neither a medical nor psychiatric professional of any sort.  So all I can give you is my layperson's understanding.


    As I understand it, anxiety so severe that we are unable to leave the house is usually called agoraphobia. Perhaps you could read up about that, and if the shoe fits, see if you can find treatment for it, as it is a very treatable problem. The most amazing thing is that we don't need to bother getting over fear.  It's okay for the fear to remain.


    Agoraphobia usually develops as a side-effect of panic attacks, although I had a friend who developed it as a side-effect of asthma attacks (because she and her doctors mistook her asthma for a panic attack for many years.)


    Your doctor might figure that if you were able to get out of the house for the tests, you should be able to get out of the house to hear the results.  However, as a patient myself, I see a difference here because test results are more daunting for most of us, than the tests themselves. Thus, it would make sense to suffer more anxiety over that.  But, as Jo points out, you can't resolve a significant health problem without going to the doctor.  So, first up for you is figuring out a first step, that you can take today, for treating anxiety.  Since you're inside the house, that would probably be a phone call.


    Who can you call?  Do you have a counselor or psychiatrist?  If so, start by calling them right this minute. If not, then start figuring out how to find one by tomorrow.  Don't worry about the whole thing of needing to leave the house to see them.  They should understand the hurdle of that.  At least, you'd think so, right?


    Please let us know how this goes.  We'll be here for you, and we'll be rooting for you! 



  11. Hello April,


    Welcome to Sclero Forums!  I'm sorry you have UCTD.  Most unfortunately, often wait-and-see is the only way they can sort out autoimmune diseases. About half the time, the symptoms and test results remain so confusing that UCTD always remains the primary diagnosis.


    As it happens, I had the UCTD label for a long time, before things sorted themselves out.  I found it a bit nerve-wracking to think that the entire world of autoimmunity was open to me, with absolutely no idea as to whether my symptoms at the time were all it would ever be.  I wanted to avoid worsening of anything, if I possibly could.  I felt this sense of urgency, to properly diagnose and treat, so I was alarmed that my doctors were just like, oh ho hum, maybe someday we'll figure this out.  If we're in the mood for it. Maybe, maybe not.


    For some reason, people who haven't had UCTD, seem to think of UCTD as being this rather mild, seemingly harmless label; like it is a great improvement over having lupus or scleroderma or rheumatoid arthritis. But from my own experience, I can tell you that I actually felt better once they began defining more specific diseases out of the UCTD mess that I was in.  It's like then at least the range of possibilities was narrowed a bit; I could focus on that disease, seek treatments for it, and know where I "belonged", with more certainty, in the realm of patient support.


    Right now, what I can tell you is that you've come to the right place for support, whether or not you remain UCTD forever.  We understand the difficult process of living with disease, of wondering what disease it is, of trying to hammer it out with logic until we find the right information and resources to deal with it, as best we can.


    Please bear in mind that I'm not a doctor, that I have no medical training at all.  Just in general, women with scleroderma face an average of six years of wandering in the wilderness of odd symptoms and perhaps even odder test results, before diagnosis. This includes well-balanced, intelligent, educated medical consumers, such as you, who seek the best information and support for their condition.  And this can happen even to those who seek expert care; sometimes they still need to be monitored for years before certainty finally arrives.


    All that said, if I were you, and had a doctor who didn't seem to care about anticentromere antibodies and Raynaud's (etc), I'd probably do the January follow-up and then decide whether or not I thought it was time to see a listed scleroderma expert.  The reason I say this is because the average rheumatologist may only see one or two cases of scleroderma in their entire career.  So it's not at the top of their radar.  However, scleroderma experts pretty much know (or privately suspect) scleroderma when they see it, and so they can sort out the differences between, say, lupus and scleroderma, or even sclerolupus, more easily than a "regular" rheumatologist.


    But you need to bear in mind that this is not a quick and easy thing, even with experts.  The harsh reality is that you may still be UCTD for years.  And that has nothing at all to do with you or your doctors....it's just that autoimmune diagnosis can be THAT elusive.  But please, no worries.  You may lay them down and rest them here in this forum.  Because regardless, come what may -- we will be here for you.




  12. Hi Ally,


    Welcome to Sclero Forums. 


    It's my impression that many disease modifying agents, such as Rituximab, take time to produce noticeable results. It's not like many drugs to relieve specific symptoms, such as taking a pill for heartburn and having it quelled within the hour.  But Rituximab they are likely to first check to see if there's any progress at about the 8-week mark, and improvements are likely to keep blossoming for about six months.


    I know how hard it is to just wish-hope-wait with new treatments, but it's likely something that takes a big picture view, like evaluating every few months to see the general trend over time.  I try to take a mental snapshot of my overall health at the end of each year.  How did I fare over the holiday season, as opposed to the year before?  How does that compare to five or ten years ago? 


    Some years I'm surprised by the comparison. It's easy to get caught up in dealing with daily symptoms, and not even realize when some symptoms have improved or even vanished. We can heal, or worsen, at the cellular level before it produces anything worthy enough to gain our attention.


    It's still very "early days" for you with Rituximab, and you are thus quite likely to be feeling a bit better, in the coming weeks and months.





  13. Hi Lacey,


    Welcome to Sclero Forums.  I'm thrilled that you're seeking counseling to learn how to reduce the anxiety inspired by the potential threat of autoimmune disease. Anxiety can totally trash our quality of life, and like Jo mentioned, can actually cause negative changes in our health. Kudos to you for recognizing it's impact on you and taking restorative action!


    Resilience doesn't come naturally to me, so I'm very thankful that it is a skill that we can all learn. I have a whole arsenal of tricks to create resilience now -- and one of the best first tools I ever discovered was seeking a good counselor to help guide me through major life changes, and then even minor disruptions that I found more problematic than others.


    For those reading this thread who have just realized they could benefit from some counseling to restore their equilibrium (or perhaps even discover it for the first time) but who don't know where to turn, usually primary care doctors are a good resource for referral to an appropriate resource.  They can generally help us decide if we could benefit from full blown psychiatric testing and evaluation, or just "regular" counseling, etc.


    Learning new ways to develop resilience will serve you well, no matter what comes your way in life!




  14. Hi Luwana,


    Welcome to Sclero Forums!  As it happens, quite a few of us have both Sjogren's and scleroderma. They figure about 20% of people with scleroderma also have Sjogren's.  It's also not unusual to be diagnosed with Sjogren's first, for any number of reasons.


    One reason might be because Sjogren's, and Hashimoto's (autoimmune thyroid disease), are thought to be "gateway" diseases to autoimmunity. But part of that might be because those diseases are more common and much easier to suspect and diagnose than many of the rarer and more unusual autoimmune diseases, such as scleroderma.  Also, Sjogren's can "go systemic", imitating or overlapping with many symptoms of scleroderma.


    I don't know your particular situation, but many of us with overlaps tend to get delayed diagnosis, since things get so confusing.



  15. Hi Lynn,


    Welcome to Sclero Forums.  You pose an interesting question, and Dr. Thomas Lehman of the Hospital for Special Surgery in New York has posted an article about this issue, entitled ANA titers, what to do?


    Here's an excerpt: "General guidelines I use. 1) If the patient has symptoms of rheumatic disease they should be evaluated no matter what the ANA result.
    2) If the patient has an ANA of
    1:40 or less and no one knows why the test was done there is a good chance it means nothing – but you can’t be sure.  If the ANA is 1:80 you are in ‘no man’s land.’  If the ANA is 1:160 or higher, a pediatric rheumatologist should take a look – not all of them will have something, but some will."


    So, the question to go back to your doctor with is, do you have symptoms of rheumatic disease?  Migraines and anxiety are very common conditions; and people with anxiety are much more prone to migraines; and I must add, migraines can also cause anxiety, it is a two-way street. As you've noted, neither migraines nor anxiety are listed symptoms for the diagnosis of scleroderma.


    I'm sure it's very uncomfortable to have health anxiety plus an ANA test that lands you in this "no man's land".  To reduce it a bit, perhaps you could discuss with your doctor making a plan to only have your ANA tested again if you develop significant symptoms of autoimmune disease in general.  As Jo mentioned, anxiety has adverse effects on health and the enjoyment of life, so tackle the issue in every healthy way you can find.  It might be that your anxiety is subtly pressuring your doctor to search for more "causes" and that can increase your anxiety, and stimulate more searches, etc.  I often push back on medical tests, asking my doctor, so if I flunk the test, then what happens?  Sometimes we are healthy enough, or otherwise sick enough, or old enough, that the tests are just not really necessary.


    I don't suffer from anxiety, although of course I'm only human, so I certainly experience it from time to time. You'll encounter many people who think they understand what you are going through, but who, like me, really don't understand because isolated experiences of lesser intensity are not at all the same as continual or more severe suffering.  That's why I concur with Jo to be sure to also seek counseling (if you haven't already), so that you have someone who truly understands and can give you very practical steps to cope for the time being,  in hopes of eventual recovery.


    We've recently added a topic, the Endocannabinoid System.  You might find that research interesting, since disruption of the endocannabinoid system might be relevant to many disease states, including anxiety and migraines, and some autoimmune diseases like multiple sclerosis and scleroderma, as well.


    Here are some warm hugs, just for you, and in hopes you feel a bit better soon.



  16. This is a gentle reminder to forum members, especially new ones, to make an effort to avoid excess drama in posts -- because forum trolls delight in over-the-top expressions.  And we ban forum trolls. For life.


    It is especially tricky to avoid drama when we are dealing with the effects of serious illness, such as scleroderma, and when we are used to letting it all hang out on social media.


    Our moderators look for "drama signs" such as exaggerations:  horrible heartburn, extreme pain, insinuated suicide threats, CAPITAL LETTERS (WHICH IS SHOUTING ON THE INTERNET), or a general tone of being more emotional than logical.


    Clearly, there are times when illness is disturbing, to say the least, and times when we feel unable to cope. Those times, we need to call our primary doctor or mental health professional right away. We shouldn't be posting on social media then, because social media is not able to provide the counseling or medication that we may need.


    Our forums aren't suited for every trouble that arises with chronic illness (or its diagnosis).  Many of us, including me, have turned to local counselors to help us adjust to the many dismaying demands of chronic illness.


    If you tend to be verbally overly-expressive, rather than risk being wrongly pegged as "just another hysterical troll", we recommend composing a forum post offline and saving it. Reread it a bit later. Look for words like "horrible", "worst", "PAIN", "unbelievable PAIN", etc.  Can you tone it down a bit yet still get your message across?


    Maybe you have "very bad heartburn" instead of the "worst heartburn ever".  Or you have "chronic joint pain".


    If you don't self-edit, our moderators may freely edit the drama out of your message -- and they also have the power to ban forever, based on just too much hype.


    Real patients tend to be factual, precise, and don't need to exaggerate anything. 


    Our community -- and your care providers -- are far more likely to take your issues a lot more seriously if you try to stick to the unembroidered, unexaggerated facts of the matter.


    And please ask your primary care doctor for a referral for counseling if you find that you are over-reacting emotionally to illness issues.  Not being able to tone down a forums post would be a symptom of that.  It's perfectly normal for us to experience depression and anxiety along with illness, and the sooner we deal with those issues, the better.


    Thank you for being part of our community, and for doing your best to understand and follow our guidelines. We greatly appreciate it!



  17. Hi Liz,


    Welcome to Sclero Forums!  I'm sorry you have worrisome symptoms and a concern about possible scleroderma.  Although many things can disrupt the gastrointestinal system, scleroderma is a possible cause of issues from stem to stern.  I would just caution you to keep a very open mind, because there are so many similar diseases, and it is equally possible to have dozens of symptoms that turn out to be unrelated, or perhaps even caused by a combination of diseases and not scleroderma per se.


    This part is not aimed at you, as I'm sure you know this already, but rather at other people searching for a diagnosis who land on this thread. It's a reminder that when dealing with doctors, it's also helpful to say that you have reason to "suspect scleroderma or similar autoimmune issues", because when people announce they are "sure" they have scleroderma (for whatever reason) perhaps 9 times out of 10 the doctor is going to be "sure" they have hyponchondria instead and diagnostic progress is cut off at the pass. Bear in mind that nothing is very certain when it comes to autoimmunity and diagnosis is a thing that is approached very cautiously, even by top experts in the field.


    I hope you at least begin getting some answers at National Jewish.  Just please go into the appointment knowing that you might have more questions than answers after just one appointment, since quick diagnoses of systemic scleroderma and related illnesses seem to be very few and far between, even at expert centers.  Often it requires extensive history collection, more tests, and observation over a period of time.


  18. Welcome to Sclero Forums.  I'm sorry that you have symptoms and concerns about a scleroderma diagnosis.  Usually scleroderma diagnosis is not very fast or easy (often it takes years), so try not to get either your hopes or fears too high while waiting for your rheumatology appointment.  In the initial stages, many of us had a lot more questions than we had (specific) answers.


    Just remember, we'll be here for you, whether your appointment is enlightening or disappointing. Since many rheumatologists seldom encounter scleroderma (it's so rare, they may only see one or two cases in their entire career, and may be very hard put to recognize it even then), most people find consulting a listed scleroderma expert to be helpful, sooner or later.

  19. Hi Jeannie,


    I just want to welcome you to Sclero Forums. Hopefully you can consult a listed scleroderma expert. I know that's not easy, especially when it requires an out of state consult. 


    Sometimes doctors seem to bend over backwards to not appear concerned, lest we catch their anxiety. I actually feel more comforted when they allow themselves to show a bit of kindness and compassion. It's like then, I can let them worry about it, so that I don't have to!


    Give your doctor the benefit of the doubt. They are likely more concerned than they are letting on. And see if you can get an expert on your medical team, too. 



  20. Jeannie, it is absolutely delightful to hear your update, and your ever-sparkling example of living life to the fullest with scleroderma, with courage and compassion, come what may.


    Congrats on the big 7-0!!!


    We are all grateful for the enormous contribution of time and caring and expertise that you have given our scleroderma community through the years. Thank you for being a beacon of light for us all...and also for your honesty in saying that some days it's just plain hard. 


    I know some newbies, especially, tend to think they are doing something wrong as they find many things to be disturbing and not exactly a tiptoe through the tulips experience, learning about scleroderma and learning how to live with it. Just knowing that we all find it hard sometimes is actually quite reassuring, when we are caught up in the middle of another adjustment. 



  21. Hi Kamlesh,


    As Dimarzio pointed out, gluten free can be quite expensive, if you aim to replace processed foods right away.  If you want to try it to see if you notice any changes, you could simply try eating only "real" food for awhile.  It's easier to simply cut out all processed foods than to read a million labels and angst over whether everything has gluten or not. Even frozen strawberries can contain gluten, if they use flour on the assembly line. I mean, who'd think?!


    So eating any real, unprocessed foods is usually a lot safer and a better trial.  Such as any real fruit, vegetable or protein in its original form (not canned or frozen or processed in any way).  Even spices can contain gluten (is that crazy, or what?), so using the simplest spices and fresh herbs can help.  Gluten can also show up in drinks, making pure water an easy choice during the trial period.


    If you begin noticing any improvements, then it's time for a medical consultation. You might need to be tested for Celiac disease before going gluten-free any longer. It's important to know whether it is Celiac or "plain" gluten sensitivity, because Celiac disease also confers other risks for continuing gluten consumption of any sort, such as lymphoma.


    I noticed some health improvements with a gluten free diet. My mother had Celiac disease, so I'm very fortunate I didn't get the full-blown version of it. I went strictly gluten, casein and soy free for over 5 years. Now 2/3 of my diet is gluten free and I'm thinking about whether I want to go all-in again. Or not. Sometimes its a balance of quality-of-life issues versus an expected pay off in symptom reduction. Eliminating any food or food group can pose a challenge for the patient, add stress to caregivers (especially any that do shopping or cooking), and can also pose social issues with restaurants, ordering, etc.


    As you may know (but casual readers may not), being sensitive is not the same as being either allergic having Celiac (either of which means you must eliminate gluten entirely). And, being gluten sensitive does not necessarily mean that it is the be-all and end-all cure for whatever ails you now. Odds are, that ship has already sailed, quite awhile ago, and blaring the fog horn at this late date probably won't bring the ship all the way back to shore.


    Some of us may enjoy more impressive results than others. Some of us may choose to overlook the issue as being entirely too much work for possibly too little pay. And then there are fence sitters, like me at present, who still stand to be swayed once more into the straight and narrow, if strong enough research on the subject comes to our attention.