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Shelley Ensz

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  1. Shelley Ensz

    Very worried. Can anyone help?

    Hi Lindsaym, Welcome to Sclero Forums. I'm sorry you have symptoms you are concerned about. Until you arrange for more health insurance, perhaps you could have this checked at a free clinic. You might also find some clues in Skin Cysts, Lumps and Bumps. In particular, lipomas are an extremely common and benign (not harmful) cause of lumps under the skin. If a lipoma grows very quickly or is painful, then it should be checked out by a doctor. Also see Unexplained Weight Loss by Mayo Clinic, and Parotid Stones. Parotid stones are fairly common (like 1 in 100 people get them). They are comprised mostly of calcium, but that doesn't mean they are calcinosis, and they are not a symptom of any form of scleroderma; and, salivary stones are not a listed symptom for diagnosis of Sjogren's, either. I'm not saying you were saying they were, either; that's just information for others who stumble across this thread while investigating parotid stones. One thing we continually address in this forum is anxiety. It can be so much more disabling than any other condition, and of course, it may also cause weight loss, and even be caused or worsened by not having health insurance. So cut to the chase, list each of your symptoms, and get them checked out all at once. Likely, you'll be relieved to either find your fears were justified, or not; but either way, you'll have some answers.
  2. Shelley Ensz

    Sine Scleroderma

    Hi Beckybee, Please excuse me while I interrupt this thread to say, wow, Jeannie, it is always such a delight to hear from you!
  3. Shelley Ensz

    Happy, smiley face news

    Hi Margaret, I'm delighted that Gareth "only" had a virus! Good spells are certainly something to cherish. I'm sure the IVIg is making this good stretch possible. Hopefully it will last for a nice long time to come. I'm joining you in the Sclero Happy Dance!
  4. Shelley Ensz

    New here! Positive Scl-70 antibody.

    Hi MeggieBeth, You're not alone. We are all capable of manifesting symptoms out of anxiety. Which is one really major reason to get and keep our stress levels under control, so that we don't confuse our illness with our reaction to it. Often, we are actually an awful lot less sick, than our anxiety thinks we are! By the same token I might add that often, we are often an awful lot MORE sicker than our family, friends, and doctors think we are. Its such a dichotomy! Also, anxiety can derail our efforts for a diagnosis, in that, if our emotional reaction is out of bounds, it is very easy for our doctors to chalk up all our symptoms to mental illness or hypochondria. They can even feel obliged to withhold a diagnosis until they believe we are mentally stable enough to handle it, because their very first obligation is to "do no harm". I was actually shocked when I really grasped that, because I thought, in my naive little way, that their first obligation was to always tell the truth, and to tell it as soon as possible. It's confounding when they can look at it from the angle that the truth can harm, sometimes. Obviously, if we can't even handle the basic idea of scleroderma, there's no way we'd be able to handle the reality of it. It's ironic, but to handle physical illness, most of us need to develop very strong psychological muscles, and at a time when we also feel the least capable of it. But, it can be done. And you can do it. It just requires mustering all the resources you can find and making it a priority.
  5. Shelley Ensz

    New here! Positive Scl-70 antibody.

    Hi MeggieBeth, Welcome to Sclero Forums. I'm very sorry you have such health issues right now. I want to reiterate Jo's advice, because anxiety can be far more devastating than scleroderma, CIDP or any other disease. The general recommendation is that if we aren't back to our normal, bouncy self within two weeks of a major disruption (such as this), then we should see our primary care doctor for evaluation and possible referral or treatment. Basically, all we need to do is further develop our resilience. Definitely indulge in all your usual self-care routines now, just like you are planning! Just beware they might not be sufficient unto themselves at this time, and if they aren't, it merely represents a grand opportunity to learn how to deal even more successfully with stress. The thing about ANY chronic illness is that it can be a tremendous source of ongoing and complicated stress. So the more adept we are at dealing with those stresses, the better we can manage our health, overall, and the more happiness and joy we can find in our daily life. Because, importantly, we do not have to be healthy in order to be happy and we do not have to wait until we are diagnosed/treated/healed in order to be happy. You're doing extremely well by seeking solid sources for support and information, and making plans to see a real scleroderma expert. Other than the arrangements for that, there's not much more you can do, or need to do, besides quelling the anxiety. It really is whatever it is, already, and no amount of thinking or wishing or dreading or hoping is going to change the matter. And, along with us, you can get through this, fine and dandy, because we'll be here for you.
  6. Shelley Ensz

    Treatment question for Scleroderma/Morphea

    Hi Anne, Welcome to Sclero Forums! Morphea often subsides, even on its own, within 3 to 5 years. It can recur, but it's not like a chronic illness that is expected to recur. In about 25% of cases, there might be one or two other symptoms along with the morphea. You'd probably like the page on our main site about Conditions Associated with Morphea. Osteoarthritis is caused by overuse and aging and is by far the most common type of arthritis. So you might be questioning whether your arthritis diagnosis is correct. To look into that, see Diagnosing Arthritis by the Arthritis Foundation. If your symptoms fit the inflammatory arthritis profile better, then you should seek a referral to a rheumatologist. If it's deemed to be inflammatory arthritis, then you may want to see a scleroderma expert, but that's highly unlikely without other bothersome symptoms, such as Raynaud's, tight skin, etc. See Diagnosis of Scleroderma. I'm only a patient with no medical training at all, but it's my understanding that follow-up would not be required for morphea that is in remission and without any recurrence or complications, beyond the usual skin surveillance by you, your primary doctor and/or your dermatologist.
  7. Shelley Ensz

    Anticentromere antibodies decrease

    Hi Tate, Welcome to Sclero Forums! There's one aspect of your post missing. That is, scleroderma is never diagnosed based only on blood work. The diagnosis depends upon the presence of certain symptoms or a constellation of symptoms, which I presume were the reasons you had the blood test run in the first place. With the right symptoms, you can be diagnosed with scleroderma without any positive blood work at all. By the same token, you cannot be "undiagnosed" with scleroderma just because an antibody returns to normal. Many people experience changes in their antibodies over time, if their doctors persist in testing for them. Perhaps its good if antibodies return to normal, or interesting if another antibody suddenly shows up, but the real question is whether your overall health is worsening, staying the same, or getting better. For me, I wouldn't read too much into antibodies. They can help during the diagnosis stage, but most of them don't directly tie in with the disease or help with managing the progression. It's possible to die of scleroderma while having entirely normal antibodies; and it's possible to live with scleroderma for many decades despite very impressive antibodies. You haven't mentioned your symptoms worsening, so I may presume they are stable. And with your treatment plus a bit of luck too, maybe they will stay that way!
  8. Shelley Ensz

    New to Scleroderma? Help!

    Hi Hanlucks, Welcome to Sclero Forums! I'm sorry you have Hashimoto's and concerning blood work and swollen joints. I'd urge you not to panic over scleroderma, just yet! Sometimes Hashimoto's can cause a positive ANA, although no telling if it's the sort you have. Hashimoto's can also cause swollen joints, from slow metabolism. So, right now, you might be in the clear! It's way too early to panic over scleroderma, even if you actually had scleroderma, it'd be on the extremely mild side at the moment, from the general sounds of things. Some phrases that helped me in the early days were, "Don't trouble trouble until trouble troubles you!" (but you could reasonably argue, this is already some sort of trouble) and "It is what it is." I hate the line, "It is what it is," but I think the point of it is that since it is whatever it is, whatever I think about it surely isn't going to change it much, one way or another. So it reduces my temptation to endlessly dwell on the subject (aka rumination which is a fantastic precursor to anxiety and depression, if not nipped in the bud in the early stages.) See what your rheumatologist says. And if there's still any remaining doubt about scleroderma, see a listed scleroderma expert. Okay, now you have a support group -- and a plan of action. You can do this thing! It won't be as bad as it appears right now. But, that said, we all do know what that initial panic is like. Pretty much we've all been there, done that, and wish we hadn't strung ourselves out over it. Yes, that's my biggest regret in what I've been through, is the pre-stressing before knowing for sure what I was dealing with. It's a trick to not do that, when it's our very own health and well being that is in question!
  9. Hi Siswithsoul, Welcome to Sclero Forums! I may be wrong (I often am!) and I have no medical training at all. But you might be tending to the lupus-y side of things; and SCL-70 is positive in lupus sometimes, as well as scleroderma. Generally speaking, the sun sensitivity would be much more of a lupus thing, and about 25% of SLE patients have the SCL-70 antibody. I'm certainly not saying that's the case, but I am pointing it out for others who hit this thread with an SCL-70 question. The two illnesses are very close, so it's not unheard of for many of us to be diagnosed wrongly with one or the other, or even to have them in overlap.
  10. Shelley Ensz

    Diagnosis dismissed

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

    Sine Scleroderma

    Hi Beckybee, Welcome to Sclero Forums! I just want to say hello and that it's nice to meet you.
  12. Shelley Ensz

    Gastrointestinal problems

    Hi Deanne, Welcome to Sclero Forums! The place to start would be with your primary care physician, who could then perhaps refer you to the appropriate gastroenterologist, or other specialist, in your area (if it is necessary).
  13. Shelley Ensz

    Plaquenil Lichen Planus

    And in interpreting my last post, please keep in mind that "headache" is a recognized "side effect" of aspirin -- even though, far and away, aspirin is better at treating headaches, than causing them.
  14. Shelley Ensz

    Plaquenil Lichen Planus

    Hi DRainey, As it happens, many drugs can cause a lichenoid reaction that results in lichen sclerosus, including plaquenil, beta blockers, and even NSAIDs. However, about 9 out of 10 times, plaquenil is effective in *treating* lichen planus, so it's sort of a double-edged sword, with the odds far in favor of plaquenil helping more than hurting. At least, this is my layman's interpretation of the dilemma. See Lichen Planus by American Family Physician for more information.
  15. Shelley Ensz

    Watermelon Stomach sufferer

    Hi Gill, Welcome to Sclero Forums. I'm sorry you have Watermelon Stomach. You've come to the right place for it. I just want to mention that this forum is super for helping to find resources for scleroderma and related illnesses in the UK. But we also have the Main world forum, where you are also entirely welcome to post at any time. So I'd recommend also jumping in there! If you want, we can also copy this thread to that forum for you.