Jump to content
Sclero Forums

Shelley Ensz

Administrators
  • Content count

    3,644
  • Joined

  • Last visited

Everything posted by Shelley Ensz

  1. False positive?

    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:
  2. Positive ANA and possible symptoms?

    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:
  3. Neck surgery, then high fever

    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.
  4. 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:
  5. Stopping plaquenil

    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:
  6. I'm happy today because....

    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:
  7. 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:
  8. New Pulmonologist

    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:
  9. Stopping plaquenil

    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:
  10. Sore swollen middle fingertip

    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.
  11. US disability form question

    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:
  12. Mostly good news from my sclero doctor today.

    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:
  13. Fingertip amputation

    Hi Pinetree, I'm really glad things are going better for you. How have things been going back at work? :emoticons-group-hug:
  14. 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:
  15. 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:
  16. 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:
  17. 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:
  18. 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:
  19. Hi Greypilgrim, I just wrote a nice long reply and lost it all by accidentally hitting the back button. So this will be much shorter! As it happens, there's huge variation in all types of scleroderma; and I think Amanda is referring primarily to the rapid-onset form of severe diffuse scleroderma, which thankfully is the most rare because it carries the worst prognosis of all. But "regular" diffuse scleroderma can develop at any pace, although overall it tends to develop faster than Limited Systemic Scleroderma. There's an old abstract by Steen and Medsger, Severe organ involvement in systemic sclerosis with diffuse scleroderma, which says, "Of the 953 patients with diffuse scleroderma, kidney involvement developed in 177 (19%), heart involvement in 143 (15%), lung involvement in 151 (16%), GI tract involvement in 74 (8%), and skin involvement in 233 (24%). Severe skin and kidney involvement occurred during the first 3 years in 70% of those who ever developed these problems throughout a mean of 10 years of followup. Severe heart, lung, and GI tract involvement developed during the first 3 years in 45-55% of those who were ever affected." All of the emphasis is mine. Make of the statistics what you will, but basically, the first three years are the riskiest with diffuse scleroderma, however based on this study, having diffuse scleroderma would make it much more likely for you to not develop skin involvement over the next ten years! That's the up side. The down side is that, however unpleasant and even disabling it can be, scleroderma skin involvement has never killed anyone. It is the internal organ involvement that can be life-threatening, and with diffuse scleroderma, kidney involvement is the greatest risk of all, but three is still a 4 out of 5 chance of escaping that particular problem...if you keep your focus on the sunny side of the statistics. :emoticons-group-hug:
  20. Some days.

    Hi Quiltfairy, You have a lot of dogs! How precious. And how inspiring Tony is, too. I hadn't visited our photo gallery for awhile so it was really fun looking through it again! :emoticons-group-hug:
  21. Update.

    Hi Quiltfairy, It sure sounds like your scleroderma doctor is on the ball and watching out for you very well. Right off hand, I'm sure few people would associate tornadoes with an increased risk of hepatitis, but now that you mention it, I can see how anything that disrupts the sewer system could create a lot of risk to public health. I especially love the way you planned your medical trip to include time out for meeting with a friend and getting your sewing machine repaired. Those sort of things are vital to our well-being, often even more so than medical care. Friendship and hobbies provide an uplift that is great for our immune system and they provide a much-needed buffer to build our resilience. Two thumbs up for that! :emoticons-clap: :emoticons-group-hug:
  22. Fingertip amputation

    Hi Pinetree, Is your finger healing properly, this time around? I really hope that your healing journey goes smoother this time around. Did you know that stress can reduce wound healing? We had a marvelous article, which I think is expired now, about how even a single argument among married couples can slow down the healing of a wound by several days. I say it is marvelous because it gives all of us a huge incentive to reduce all sources of unnecessary stress in our lives and to increase our emotional resilience. I suspect what happens is that we all have only so much energy to work with each day, and every bit of stress gobbles up some of our energy. It takes tremendous energy for our bodies to heal, thus, stress (or doing too much of anything), depletes the energy that we need for healing. Of course, my theory could be entirely full of it! But it can't hurt, and might help, to maximize relaxation in your life right now. It's a great time to tune out the negative, put on lovely music, relax with a (decaf) tea, and take a luxurious nap. A cheerful tune for your healing journey could be, "Don't worry, be happy!" We're all eager to hear how things are progressing, and hopeful that they are now going in the right direction. Keep us posted, okay? :emoticons-group-hug:
  23. Disability Review

    Hi Sweet, After so many years, it would probably take a downright miracle to cure you, especially of scleroderma. They know that. They just need to follow up to make sure you aren't somehow back to work full time, without having let them know about it. Just fill out what they ask for and send it back in. If they need any more info, they will let you know. Miocean's situation is a little different, as they typically review people who have had transplants, or major life-changing treatments, to see if they are now cured and able to return to work full time. But unless you've enjoyed some tremendous curative treatment for scleroderma that has had you bouncing back to work full time, you hardly have anything at all to worry about...except, unfortunately, still being sick, and still not being able to work full time. :emoticons-group-hug:
  24. Gareth update

    Hi Margaret, I'd just say that in general, difficulty swallowing is not painful. As in, not continuously painful, for most of us but there are exceptions, especially when there is a lot of heartburn or throat ulcers, or severe narrowing. And when food goes down very slowly or actually gets stuck, that can be another matter entirely, and one that sometimes depends on the food, too. For example, soft scrambled eggs would be perhaps a bit uncomfortable if stuck (although its not as likely to get stuck at all if it is well chewed), but dry toast, poorly chewed, could feel very harsh or grating or irritating or downright painful, like it is scraping the sides of the throat going down. Most of us quickly learn that we need to eat slowly and chew carefully, and we tend to favor softer foods. So for example, Gareth would probably find a breakfast of custard preferable to dry toast, or prefer a smoothie over chips and salsa. Oddly enough, though, there is a gene that causes some people to dislike soft foods (like pudding) because to them such things taste slimey. However, most people thoroughly enjoy soft foods and incorporating more soft foods -- or even "liquid diet" recipes -- can make mealtimes much more enjoyable when trying to cope with swallowing difficulties. See more on our Scleroderma and Difficulty Swallowing (Dysphagia) page. :emoticons-group-hug:
  25. Coming back after a while

    Hi Kamlesh, I'm just dropping by to say hello, and welcome back! In fact, I'd like to use this as an opportunity to remind many of our members that it is never "too late" to touch base again. You'd be surprised how many of us remember, and miss and wonder about, those who are not actively publicly posting on the forums. It doesn't matter how much time has elapsed, our collective memory goes back for over 15 years. And if it's been so long that you've even forgotten your username, feel free to join again; and if you let Jo know, she can often find your old username and reunite us with your old messages, as well. In short, we are always happy to hear from all of you. Okay now, back to you, Kamlesh. I'm very impressed with the way you are hanging in there, and using your meditation and faith to fill the gaps left by the ravages of illness. It's pleasant when our medications or treatments work and allay the pain or quell our symptoms. But frankly, we all know that sooner or later, there will be cracks in the system that may leave us mostly to our own wits for somehow coping with symptoms that cannot be halted, reversed, or assuaged. That's when those of us, like you, who have studiously developed our emotional strength and resilience, find ourselves so grateful for the attitudes - and friends -- that we've developed along the way. Kudos to you, for using everything at your command for helping deal with scleroderma -- and not just exclusively medical treatments. You set a fine example for us all! :emoticons-group-hug:
×