Shelley Ensz

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Everything posted by Shelley Ensz

  1. Hi Jo, One thing you didn't mention was that as soon as you got out of the recovery room, the first thing you did was to let me know you had online access and could get into the Forums! I also see you didn't mention that you prepared all the April news ahead of time so that even the newsroom wouldn't suffer in your absence. I'm delighted that your surgery went so well, and especially glad that you were right on top of the cellulitis so that it didn't get out of hand. It is fabulous to have you "back" in the forums, although I think the only time you were really gone was the few hours that they had you thoroughly knocked out with anesthesia. I think if you had only had the spinal, as planned, you might have live blogged the whole event, as I had jokingly requested. :blink: Here are some Get Well flowers for you.
  2. Hi Andee, Welcome to Sclero Forums! I need to leave for an appointment now, but wanted to at least say hello to you before I left. Many others will chime in with their experience. Basically scleroderma is a very difficult disease to diagnose; it often takes an average of six years from onset to diagnosis. It is hardly ever diagnosed right away, except in really super severe and extremely obvious cases -- and even then we've heard of long delays. Try to work on accepting the idea right now that you might just have Raynaud's and some antibodies. At least, that's what you have right now, right? You are obviously also at risk for developing more symptoms down the road, either that or perhaps some general autoimmunity runs in your family in which case strange antibodies can appear and even one or two symptoms of connective tissue diseases, without anything full blown ever occurring. Try to focus on being flexible and resilient right now, as you will definitely need those skills, even if all future testing always shows that you are never any sicker. You'll still need resilience just to cope with the possible fright of it, won't you? You can do it, you can adjust to this, and we'll be here for you.
  3. Hi NorthStarHope, It's always great to hear from you. Thanks for the tip on Resunab, as you see we've now included info on its phase 2 clinical trial in our Scleroderma Treatments and Clinical Trials section. Thankfully there is extensive research ongoing for scleroderma now, with many treatment advances in recent years. When I first started in this field, even a single clinical trial was huge news, now there are so many that it is hard to keep track of them all! I'm sending big hugs for you, and for your sister. She is very blessed to have your care, understanding, and abiding support. As you know, often one of the hardest things for people with scleroderma to deal with is the lack of concern or comprehension on the part of family members and friends. It's often like a "Say what?" followed by total tune-out, at a time when people most need their understanding and support. :emoticons-group-hug:
  4. Hi Ronald, Welcome to Sclero Forums! You have obviously survived systemic scleroderma for a good 30 years now. I hope you stick around our forums for many more years as a fine example of good coping and longevity with diffuse scleroderma. If the ulcers are infected, then oral antibiotics might be necessary. Keep an eye out for redness around the wound. Fever and/or red streaks going up from it signal an urgent situation (of course). Many things can affect wound healing time, including how we care for the wound, age, stress, other illnesses (such as diabetes) and nutrition. I'd recommend that you at least see your primary care doctor to discuss wound care, and your options for a new rheumatologist (hopefully, a listed scleroderma expert). With prolonged scleroderma ulcers, the rule of thumb is, "If it's not healing, it's getting worse!" If it is fairly stable, at two weeks, I wouldn't be quite as concerned as I would at two months. I had a small toe ulcer that took over a year to heal, that had no infection and no complications. Finger ulcers are the hardest as it is very hard to remember to protect the wound at all times and from all the elements, and to not bump or irritate it. Sometimes underlying problems need to be addressed for healing (such as optimizing circulation, or diabetic care.) See our section on Digital Ulcers for more info. :emoticons-group-hug:
  5. Hi LCT2007, Thank you for the update! I'm really glad you are in touch with a juvenile scleroderma expert now. It is good for everyone to be tested for Vitamin D and especially those with any symptoms of autoimmune diseases. See our section on Causes of Scleroderma: Vitamin D Deficiency. There are free mobile phone apps that track Vitamin D exposure. The effect of sun exposure can vary due to time of day, time of year and geography. The apps are so precise, they even consider how much of the body is exposed, and can literally sound a beep to let you know it is time to turn over (if you are sunbathing). It was enlightening to me, as I wasn't getting even 1/20th of the exposure I thought I was; and this gives a measurable way to balance things out with supplements, as well. You might not want to micromanage daily exposure, but using the programs to get a general idea, such as encouraging wearing less clothing (on warmer days) and playing outside (and not in the shade) during peek hours in your location -- and joining her to get yours too, if possible -- might be a really fun way to deal with D, and to make some lemonade, out of all the lemons. :emoticons-group-hug:
  6. Hi Vfazfont, Welcome to Sclero Forums. I'm sorry you have concerns about autoimmune disease and send my best wishes to you. Please keep in mind, of course, that I have no medical training at all and verify everything I say with a reliable medical source. I think you could begin by consulting your primary care doctor about your concerns. To me, most of them sound like they might be entirely in line with ulcerative colitis and anxiety. I know it must be extremely hard to draw the line between the symptoms of anxiety and other illnesses, especially since anxiety can make one worry so much about other illnesses, so it is quite a catch-22, isn't it? I'd approach it by first just trying to figure out whether or not you have Raynaud's. It's really rather simple. Do your hands or feet turn white or blue in response to cold or stress? If so, then you may want to have further testing. With vascular lab testing, they do very precise tests to measure the exact temperature of every finger after generalized cooling and heating. Some doctors skip the fancy testing for starters and just dunk your hands in a bucket of ice water to see if they turn the right sort of colors, quickly enough. What I like about Raynaud's is that it is measurable and visible. You can't fake attacks, or their severity, and the colors neatly display for the whole world to see! Because of that, if you are doubtful you have Raynaud's, it is quite possible that you might just have poor circulation which can often be improved by drinking more water, eating better or more regular meals, and appropriate exercise, etc. I hazard to say that most of us with Raynaud's would say that attacks are absolutely unmistakable. The color changes are quite startling and we move into action to warm them up as soon as possible. Therefore, it may be a very good thing that you are not sure you have Raynaud's. If you have poor circulation, though, then you will still want to do things to both improve your circulation and to avoid developing Raynaud's. See Raynaud's Prevention which includes a video presentation by Amanda Thorpe. I'd use Raynaud's as the cutting edge to see whether or not other things matter. Some problems swallowing and breathing go along with anxiety, and so on and so forth. Its the range from slight to severe and constant where in the middle the line is usually drawn between anxiety, and symptoms worth pursuing. So pay special attention to doing everything possible to keep anxiety under control. If the anxiety is just fine, you are feeling calm, happy and providing excellent self-care, and then you notice singular prominent symptoms when the anxiety is at bay, then you can more confidently zero in on them. I'm sure worrying about scleroderma is not going to help anxiety at all. Therefore, let's back off the idea of scleroderma for a minute, okay? The first step is make sure your anxiety and ulcerative colitis are being managed excellently. Then, consider the question of Raynaud's. You can have Raynaud's all by itself, even. If you do have it, then get it properly diagnosed and deal with it. I don't think going to the doctor with a laundry list of things that they feel are already accounted for is going to get you anywhere, especially since they can account for the vast majority of them with things you have already been diagnosed with, so they very likely to chalk it all up to anxiety. So my reasoning is that focusing on just a single item, at this point, would be more effective in moving your medical care forward IF it needs to be moved forward. (That, I simply don't know!) So, if it were me, I'd start with Raynaud's. It's not a "soft" symptom. It's provable. It's a great starting point...or perhaps even a great way to put the idea to rest, depending on how things go. In any regard, we're here for you as you go through the sorting out process, and as you see, we offer a whole range of ideas in how you might want to approach things! :emoticons-group-hug:
  7. Hi LCT2007, Well, what an interesting and perplexing appointment that was. It is hard for me to get my head around all of it, and I really cannot imagine how it must be for you. The doctor obviously had some tough news to deliver, and they must be very concerned for your daughter's health. I am glad that they are going to do all the baseline testing and keep a close eye on her, as she certainly is "at risk" of developing systemic juvenile scleroderma. Please keep in mind that I am not a doctor and have no medical training at all! However, in my view, being at risk or even at very high risk is not the same as having it right now or absolutely inevitably developing it. What it does mean is that this is serious enough to warrant you following through on all the recommended tests for her -- to do otherwise would be an egregious mistake under the circumstances. But at the same time, try to keep your head on your shoulders to the absolute max. Pull out all the stops to keep your attitude upbeat, but without going into denial or relentlessly pursuing unproven or disproven "cures" for scleroderma. We research breakthroughs on a daily basis so you will be the first to know of anything that is proven to be of benefit for your daughter, and I might warn there are *many* charlatans with bad info on the internet who do not have your daughter's best interests at heart. Please keep pursuing a listed juvenile scleroderma expert for your daughter. Yes, they are few and far between, and hard to reach, but worth it in the end. Unfortunately, stress worsens scleroderma and its symptoms, and, particularly Raynaud's. Your cheerful and flexible attitude, taking things seriously but not *being* serious, will do wonders for helping your daughter make a successful emotional adjustment. Let's face it, we can all adjust physically, somehow, to any illness or injury. It's the emotions of it that are the hurdle for most of us, and even more so with the complication of needing to set an example for your daughter. You can do it. We will be here for you. Reducing sources of inflammation, like gluten, might have a small impact, or it might not. Researchers are not entirely sure of the connection between gluten and scleroderma yet. But, going off the rails with strict diet protocols could be *very* stressful for your daughter, and that could worsen her health even more! So this is time to take a really deep breath, and then another one. This is not an emergency. Its something important to follow through on, with tests and garnering information. It's a very long term process that you are embarking on, to see whether or not she EVER develops connective tissue disease. EVER is a very, very long time, and much of that time might be spent with her in pretty good health, considering. Well, I'm running out of consoling words. But you get the idea, don't you? We care, and we are here for you, and as you learn more, it will actually get better and easier to cope with. Promise. :emoticons-group-hug:
  8. Hi Dani, Welcome to Sclero Forums! I'm sorry you are sick and have questions regarding diagnosis. As the others have mentioned, autoimmune diseases and scleroderma in particular can be very hard to diagnose. Typically people are followed by rheumatologists for many years before the diagnosis is nailed down. So my question is, did the rheumatologist ask to see you again, or are they still in the process of running tests (for this round)? When there appears to be something autoimmune going on, but it is uncertain or in the initial stages, they often recommend follow-up in perhaps six months or a year. They assume of course that you will see your primary care doctor if you develop any new or worsening symptoms in the meantime. Yes, there can be false positive tests. But educate yourself on the most telling symptoms of various autoimmune diseases, so that you can get a second opinion from an appropriate expert, if you have sound reason to believe your local doctors are missing the boat, which unfortunately is all too common with rare diseases (like scleroderma). :emoticons-group-hug:
  9. Hi Marchr, Welcome to Sclero Forums. I'm sorry you have concerns about your mother having possible scleroderma. I need to run right now so I can't answer all your questions, but many here will pitch in to try to help. My thoughts are with you and your mom. :emoticons-group-hug:
  10. Hi Quiltfairy, I'm glad you have your neck surgery over with. I'm sure they'll figure out the fever soon and get you on the road to improved health. :sickly: I'm thinking of you, and sending all sorts of good thoughts your way. Here are some Get Well flowers for you.
  11. Hi LCT2007, Welcome to Sclero Forums. I'm very sorry you have concerns about your daughter's health. I understand your concerns. It's probably impossible to actually "not worry" since right now, you know just enough to cause a lot of worry but nothing to thwart or refocus it. Your job, as I see it, is to do everything possible to calm yourself until you get some facts from the rheumatologist on Wednesday. I would *strongly* recommend reading a few of our comforting replies and then entirely unplugging from the internet and all health-related thoughts until then. If you have any hobbies, throw yourself into them right now, or clean the house from stem to stern. In other words, find a positive outlet for the nervous energy, if you possibly can, because maintaining YOUR positive attitude is key to helping your daughter not over-react or experience more stress about this. One very comforting thing I can tell you, and many others will chime in on this, is that Raynaud's is very common in the general population, and particularly in young, thin girls. It's possible your daughter might be having something that is causing the attacks or worsening them, such as stress or cold or pop or tea or even some candies (any sort of caffeine.) Antibodies are a catch-22. Sometimes they mean a lot and sometimes they mean next to nothing. The symptoms, and especially the clustering of symptoms, means far more. She might have antibodies just because some general autoimmunity runs in your family, in which case its entirely normal for other family members to have some antibodies and even some symptoms of autoimmune diseases without ever getting the whole disease. Also, lab errors are very common! Likely her doctor will want to repeat the tests with another lab, either now or later on. That said, the results so far are important enough for you to be sure to keep her medical appointments. But try to think, it is *all* good, that it will be *very happy* to either find out it is a lot of fuss about next-to-nothing, and that if it is the harbinger of something-or-other, that you have caught it *very* early on so your daughter will have truly outstanding care and thus an awful lot less to worry about. Also, all sorts of antibodies can occur with "just" Raynaud's. Likely it will be a very long time, perhaps even years, before you know for sure if your daughter has, or doesn't have, any larger underlying illness. Therefore now is the perfect time to develop an attitude! The attitude is that you are a very flexible parent, and a wonderful cheerleader for your daughter. Your positive attitude can show her how to deal with *anything* in life with joy and happiness and confidence. You can do this. I know you can. We're on your team. We understand the challenge it is to just keep your chin up a few more days until you know more facts. You can adjust to any fact. We all know that. It is the uncertainty that drives most of us right up the tree, if we let it. We totally get that, and some of us have terrific hobbies and very clean homes to show for it, too. :emoticons-group-hug:
  12. Hi Judy, Thanks for asking us to clear up the confusion for you, if we can. Yes, the thread is about taking oral plaquenil. But Margaret was thinking about having Gareth stop plaquenil for a number of reasons, one of them being she thought maybe it was making his veins worse when getting his IVIg treatments. IVIg is a treatment in and of itself, that is always administered by IV. However I think we went around all around the bend and decided the difficult with Gareth's veins was probably not caused by plaquenil. But of course we're not doctors, and all that, so she should ask his doctor(s) about it all, as well. Anyway, that's how the issues became intertwined, and you got lost in the maze of logic. I hope this un-fuzzes you, but if not, I'm sure someone else can take a whack at it. :emoticons-group-hug:
  13. Oh my goodness. It's hard to believe that it's been five years already, Miocean! What a delightful thing to rejoice in. Nothing can make me much happier than to join in the Sclero Happy Dance!! :emoticons-line-dance: Happy Anniversary Miocean! :emoticons-line-dance: :emoticons-group-hug:
  14. Hi Automartin, Welcome to Sclero Forums! I really can't add anything to what Jo and Amanda have given you, but I did want to just swing by to say hello, and welcome. :emoticons-group-hug:
  15. Hi Miocean, I don't know how I missed this thread earlier. I'm sorry your lung testing went poorly. It really may have been an equipment issue, especially since you know what oxygen is supposed to feel like, and your sats ran so low even when it was pumped up. I'm hoping your next round of tests goes better! :emoticons-group-hug:
  16. Hi Margaret, That's an excellent question you ask regarding plaquenil. As it happens, plaquenil is not an immune suppressant, and it does not make people more susceptible to infections. Rather, it is a disease-modifying drug. In addition to ameliorating some connective tissue disease symptoms, it has actually been shown to increase longevity in lupus patients! Best I can tell, plaquenil does not affect the veins, except perhaps in a positive way as it reduces the incidence of blood clots in people with antiphopholipid antibodies, and can be helpful in treating vasculitis. See Anti-Malarial Drugs by Johns Hopkins. I was on plaquenil for years, but had to go off it as eventually it worsened my psoriasis. I had a very hard time going off plaquenil, because I got a lot sicker each time. You're supposed to be able to just stop it; its not like its addicting. But I simply could not, so I ended up very gradually tapering, and then increasing again when I encountered problems, and gently decreasing again, and then getting other meds to handle the gap it left. Overall it took me six months to transition off it, and to this day, I still wish I had been able to stay on it. It is pretty amazing for being so cheap! Difficulty with veins is often caused by inadequate hydration. It can help a lot to start drinking more fluids the day before any treatment or blood draw, and to limit dehydrating fluids or medications, such as caffeine (which is in nearly all sodas), to have a little bit more salt (or not restrict it quite as much the day before), and to cut back a bit on any diuretics (like lasix) on the day of the procedure (with doctor's permission, of course). Our blood is made primarily of water, and when we are even temporarily low on fluids, we literally have less blood, making our veins shrink and become even less accessible than usual. I find it helpful to do all of these things, and if it still looks like it may be difficult, to have a heating pad on the area for about five minutes beforehand. See Six Tips for Good Blood Tests. Also, my personal experience is that there can be a huge difference among techs! Some of them just have the knack for difficult draws, and when I find a gem in any particular office, I get their name and try to request them the next time. The desk will tell you it doesn't matter, that they are all the same -- but in my opinion, that is absolutely not true. I do believe in the existence of Vein Whisperers, having been magically blessed with them occasionally. So part of the problem might be the tech, because some of them are lots better than others when it comes to doing veins that are not the customary, easy draw. :emoticons-group-hug:
  17. Hi Charliehorse, Thank you for updating us on your finger. I'm glad its getting better. Did you know they have products called fingertip protectors? They are often used by guitarists, and for repetitive office work. You might find it handy to use one part of the day, especially when you're going to be typing, and once it has healed, keep on using them intermittently. The protectors make the finger more usable than when it is entirely wrapped. There are also cloth fingertip protectors, and even fancy ones with gel. I had to wear finger splints for a long time (due to arthritis), and fingertip protectors prevent and soothe irritation from the splints. Anyway, I'm very glad its better and that it wasn't anything super serious, too.
  18. Hi Sandcat, Welcome to Sclero Forums! I'm sorry you have scleroderma and need to apply for disability. Generally speaking, the answer to this question would be "Yes." See Systemic Sclerosis Prognosis and Mortality. And if you have severe systemic sclerosis, your case will be fast tracked by Social Security. See Disability and Scleroderma by NOLO. That said, many of our members initially received disability based on other diagnoses, such as fibromyalgia, often because of the extreme lag between onset of scleroderma symptoms and diagnosis. If you are doubting your doctor has you properly categorized, based on information on our site, then you are probably right. You might want to make sure that they are a listed scleroderma expert, and/or seek a second opinion. Most usual rheumatologists have extremely limited experience with scleroderma and thus commonly get the diagnosis or treatment wrong. So to optimize your care and longevity, you want to make sure you have a scleroderma expert on your medical team. If you have to travel to see one, they are typically outstanding at working with your local rheumatologist or doctors to continue to monitor your care. Also see: Types of Systemic Sclerosis. :emoticons-group-hug:
  19. Hi Quiltfairy, I think we should throw a Sclero Happy Dance for you not having emphysema or hepatitis,, after all! What an absolute delight, and I am sure it is a huge relief to you, too. :emoticons-line-dance: Unfortunately, when we are sick we have to have so many tests, and often get inaccurate or conflicting diagnoses. Just the spectre of having a test can hatch a whole slew of worry bugs. But what a delightful thing it is, isn't it, to have some things properly ruled out, and others properly diagnosed? I hope your neck surgery goes on without a hitch, this time! :emoticons-group-hug:
  20. Hi Pinetree, I'm really glad things are going better for you. How have things been going back at work? :emoticons-group-hug:
  21. Quiltfairy, if everyone here with scleroderma who has been called a hypochondriac by their friends or family raised their hand and we took a screen shot of it, there probably wouldn't be a computer screen anywhere wide enough to display the whole picture. Although hypochondria is actually quite rare, inaccurate armchair diagnosis by unqualified people is probably at epidemic proportions, and it is typically helped along by the truly drastic delay in accurate diagnosis for scleroderma. But, it is what it is. You can't fight a "diagnosis" of hypochondria by explaining more about your symptoms, because that just affirms the diagnosis in their mind. What I do is try to silently forgive them for being terminally stupid, and in the case of relatives, I really hope that the terminal stupidity is not genetic. And if anyone has found a more effective way to deal with this all-too-common situation, we'd surely all love to hear about it. :emoticons-group-hug:
  22. Lizzie, hello it's great to hear from you again! Amanda, yes, it is the different systems for diagnosis used hither and yon, and also changed over time, that makes the categories for limited and diffuse more of a moving target. You have what would likely be called rapid onset diffuse scleroderma in the U.S. So people should be aware that their officially designated type of scleroderma may sometimes change only because they change doctors or move to other countries, even if their illness hasn't changed in any way. And Lizzie's case illustrates the gray area, which basically means scleroderma is sometimes going to do whatever it pleases, regardless of how it is labeled (or not) at the moment. Unfortunately, our bodies more often than not fail to read the textbook description for scleroderma, and creatively do their own thing, either worsening or healing on their own accord. :emoticons-group-hug:
  23. Hi Grey, The chief advantage you have, over other people in your same boat, is that your illness has been identified already. This is extremely significant because you, and your doctors, are already aware of the possible complications you may face, with both scleroderma and pulmonary hypertension. Therefore, you are highly likely to maintain good health habits and appropriate medical care, and identify any complications early on, when they are at their most treatable. This puts everything in your favor for increased longevity under the circumstances. Also, you have sought reliable sources for support, which means you aren't going to be left dangling emotionally, which would make you even more vulnerable to worsened health. Clearly, you have already opted out of the "diagnosed by autopsy" category. Rather you are in the "living with scleroderma" category and with any luck and a good degree of planning and proper health habits and medical care, I trust you will be one of those who s t r e t c h those statistics to the maximum. In this day and age, with improved detection and treatments, that is both possible, and perhaps even likely. :emoticons-group-hug:
  24. Are you new to Sclero Forums and in need of an avatar for your profile page, or are you an old member who would like to update yours? Here is a site that might help you, Mr. EduHowTo, with 15 Free Safe AVATAR Creators. I've used the first site they list, DoppelMe, to create my current Sclero Forums avatar. We strongly recommend against using your real name or an actual, identifiable photo of yourself due to all sorts of internet dangers, which are of course magnified when discussing our health issues. Speaking of which, you might also need a new screen name, eh? There are sites that can help you pick a new screen name. One of them is Screen Name Generator. For our site, we need to keep our screen name neutral, without reference to politics, religion, sexual preferences, etc. so that we can remain focused on what unites us, not what could possibly divide us. Enjoy, have fun with these resources and we will be thrilled to see your new "facelift" on Sclero Forums! :emoticons-group-hug:
  25. Hi GreyPilgrim, I believe there was a study a few years back in the U.K. which showed that about 40% of systemic scleroderma patients don't even know exactly which type they have, presumably because our doctors never told us. Often that might be because even our doctors are not entirely certain. It is not unusual for things to be fuzzy or borderline because this is not a cut-and-dried disease. In fact, its more of a moving target, since researchers seem to be forever debating how to classify the subtypes. One hazy thing that began years ago is that there are two different systems for systemic sclerosis. One considers skin involvement above the wrist to indicate diffuse scleroderma; the other insists that only skin involvement above the elbows indicates diffuse. So by this reckoning, someone with skin involvement only up to their elbows would have limited scleroderma according to one doctor, and diffuse scleroderma by another. Keep in mind, the *only* thing that limited versus diffuse scleroderma really means is that the skin involvement is less extensive in limited scleroderma. Either type can affect virtually any part of the body, or occur at any speed. The involvement can range from fairly mild to severe to life threatening, and such complications can set in at any time over the course of the disease. Also, any type of systemic scleroderma can spontaneously settle down, or even recede, even without any treatment. In fact, the normal course of the disease is to wax and wane, and that is what makes studying treatments for scleroderma invariably confusing and frustrating for researchers. It is common for them to think they are on the brink of a cure for scleroderma until large-scale clinical trails are unblinded and reveal that the drastic improvements that were seen were just as common in both the treated and the placebo groups. Since there is a such a strong placebo effect in scleroderma, so strong that it even confounds the researchers, one of the important take aways is that it could be very helpful to all of us to *believe* that our treatment plan or health habits will improve our health. A positive attitude is very likely a boon for us, which is great news as being positive is only a learnable skill and it is not dependent on our circumstances or genetics. Now, don't get me wrong. I don't think a positive attitude will prevent scleroderma or even cure it. Rather, that it will just put things in our favor to help our bodies make the best of a bad situation. It drives me bonkers when people over-credit attitude, as though it will make anyone or everyone overcome anything or everything, and thus live forever in perfect health. That is not a positive attitude, that is magical thinking, on a scale that is out of touch with reality. No, I'm just talking about how attitude can take the edge off things and at minimum make our journey more pleasant for us even if, in the end, it is the same journey that it would be if it was accompanied by a totally negative attitude. Bottom line? The methotrexate will help you the absolute most if you throw all your belief into it. It also would be helpful to *expect* that your scleroderma symptoms will relent a bit, just in the natural course of the disease. Take the positive thoughts about methotrexate plus the natural waning of the disease, and you have a LOT to be positive and hopeful about! And those positive and hopeful thoughts will sway your immune system through all those fancy neuroendocrine or whatever pathways. It's an interesting thing to know what type of scleroderma we have, but it is seldom a necessity, and few of us actually know for absolutely certain what type we have. There is usually a lot of wiggle room between what our symptoms, our blood work, and what our doctor(s) have told us. My conclusion is it has to be extremely common for most of us to be self-identifying with only our best guess. I would also venture to say from my observation of the stories submitted on our main site and our book series, that the majority of people have pretty accurately pegged themselves, when pressed to identify as having either limited or diffuse. Therefore, I say, that if you think you have diffuse scleroderma based on this or that, you are probably right, but it will also probably take years for that to be confirmed by your doctor, and even then, another doctor might disagree with the classification, if, for example, your skin involvement is not yet above your elbows. So, are you telling the "truth" or not if you tell people you have diffuse scleroderma? I'd venture to say "yes", because you are basing it on some identifiable fact that means it is more likely than not; with the caveat that it would be true unless your scleroderma expert has put you in another permanent category and explained their reasoning to you. And in this usually fogged-in realm, that's about as good as it can get. I hope it will help you to realize that very few things are carved in stone when it comes to scleroderma types, and that most things about it are grey and not as black and white as most of us would wish. :emoticons-group-hug: