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Shelley Ensz

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Posts posted by Shelley Ensz


  1. 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.

     

    :hug-group:

     

     


  2. 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!

     

    :hug-group:

     


  3. 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.

     

    :hug-group:


  4. 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.

     

    :hug-group:


  5. 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!

     

    :hug-group:


  6. 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.

     


  7. 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.


  8. 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. 

    :hug-group:

     


  9. 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. 

     

    :hug-group:


  10. 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.

     

    :hug-group:


  11. Hi Kamlesh,

     

    In some people, there may be a connection between gluten and scleroderma or other autoimmune conditions.  We have a section of our main site on it. 

     

    It might reduce some inflammation to avoid all gluten (which is a mighty endeavor in itself) but only if you happen to be sensitive to it. 

     

    See Celiac Disease and Gluten Sensitivity at https://www.sclero.org/scleroderma/autoimmune/celiac-disease/a-to-z.html .

     

    :hug-group:


  12. Hi Kamlesh,

     

    I'm sorry you're having login issues. Usually that is caused by corrupted cookies. 

     

    Could you please try deleting your browser cookies, then re-enable cookies (which is necessary for the forum to work properly) and try again? 

     

    :hug-group:


  13. Hi Jean,

     

    Then call another disability attorney. If you quit your job, they are just going to complain that you should have called them first. So, keep calling until you find someone who actually cares and isn't just out to make a fast buck.

     

    You are right to wonder how much longer you can hold out, and you really need to know all of your rights and responsibilities before that day arrives.

     

    :hug-group:


  14. Hi Quiltfairy,

     

    I want to apologize for my very belated reply.  I'm sorry that you lost your dog, Tony. :crying:

     

    Is Mariaha feeling any better yet?

     

    I'm so happy for pets. I think of them as a secret weapon for chronic illness, just as good if not better than most medications!

     

    :hug-bear:

     


  15. Hi Jean,

     

    Anyone who is thinking they may not be able to continue working full time should consult a disability lawyer immediately, before letting their employer know or making any other work arrangements (like working fewer hours, working

    from home, taking a less demanding job, etc.)

     

    Initial consultation with a social security disability lawyer is always free.  If they take your case on, they take a percentage of your first Social Security disability check (and none after that. The percentage is set by law.)

     

    Systemic scleroderma is a listed disabling condition, however, the applicant must prove that they meet the medical requirements (as well as having enough current credits in the Social Security system). See Scleroderma and Social Security for more info.

     

    Please make an appointment with a disability lawyer right away. Many people make the mistake of worrying that they might be jumping the gun, or just hope that things will somehow magically improve.  But people facing possible disability are at a tremendous disadvantage in every way, and it is impossible to plan too soon, or too well, for such an eventuality.  For example, it can take months -- and even years in some jurisdictions -- to receive claim approval (or denial).  And even after approval of disability, it is still nearly a two year wait (from time of initial disability, as established by Social Security) for Medicare benefits to kick in.

     

    Also, many people wish they had never let their employer get a whiff of their illness beforehand. Although there are some protections under the Americans with Disabilities Act, there are a great many exceptions which can work to the detriment of a sick employee.

     

    :hug-group:


  16. Hi Worried,

     

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

     

    Perhaps you could make some progress by asking your primary doctor for a referral to a rheumatologist. Then they could perhaps run some tests or monitor you to see if any other symptoms develop.  Then, if it looks like scleroderma, which it may, they could refer you to an expert center for further evaluation.  Bear in mind, like Jo mentioned, that a scleroderma diagnosis is very often a long and difficult process, often years, unfortunately.  There is an effort afoot to get it diagnosed in the earlier stages by scleroderma experts, however that has not yet seemed to have caught on very well among rheumatologists, in general.  So if you have tests done that seem to support the diagnosis, you may then need to push for the expert consult.

     

    :hug-group:


  17. Hi Firefly,

     

    Welcome to Sclero Forums. I'm sorry that you have worrisome symptoms and blood tests. Please keep in mind that I'm not a doctor, and have no medical training at all.

     

    As it happens, it will take an expert to sort your case out.  The first test you flunked, "dRVVT 47.4 HIGH" is what is known as the lupus anticoagulant.  And SCL-70 antibodies also occur in people who have lupus. Research shows that people who have lupus with the SCL-70 antibody are at greater risk for pulmonary hypertension and kidney involvement.  In a 2001 study, none of the lupus patients who had a positive SCL-70 also had scleroderma; I mention that because it is possible to have the two diseases in overlap, but it seems it is more likely that with these results, you would likely have either lupus or scleroderma (but it would seem that in this instance, the odds are, not both at once.)

     

    While the doctors sort things out, I'd suggest you seek support from both the lupus and scleroderma communities.  Since your inquiry just doesn't sound like the usual scleroderma onset story, which is quite varied in itself, you might want to read up more about both illnesses while you wait for your rheumatology appointment. This sort of thing requires many years of medical training and experience to properly sort out!

     

    :hug-group:

     


  18. Hi Eve,

     

    Welcome to Sclero Forums!  I'm sure you're curious as to which form you have.

     

    Please see your doctor regarding your face rash. It is unlikely to be related to scleroderma, and probably is something very treatable. 

     

    I've had lots of face rashes, but none of them due to scleroderma.  A good rule of thumb to follow is to *never* assume that any new symptom is due to scleroderma, but rather see your primary care doctor about it right away. Have them start from scratch to diagnose it, and you'll find many items are obvious, ordinary, and easy to treat -- because with any type of scleroderma, we can all get absolutely anything else on the medical menu. And, in fact, we're probably a bit more likely to acquire anything, than the average person.

     

    Let us know how it turns out, too, okay?

     

    :hug-group:


  19. Hi Dimarzio,

     

    That's a good question. We continually erase old items on our main site, trying to keep it current within 3 years. Occasionally this wipes out a topic, once research seems to have stalled on it. In the case of nicotine, a large study was completed in 2011, which apparently erased doubt as to whether or not nicotine was beneficial or harmful in systemic scleroderma.

     

    When there's smoke there's...scleroderma: evidence that patients with scleroderma should stop smoking. Overall, these data provide robust statistical support for the notion that smoking has a deleterious effect on SSc. These effects can be long-lasting, but stopping smoking cessation could be beneficial with respect to several other outcomes, notably Raynaud’s. The authors concluded that physicians caring for SSc patients should encourage patients to stop smoking as soon as possible. J Cell Commun Signal. 2011 Mar; 5(1): 67–68.

     

    The article noted increased severity of Raynaud's in current smokers, which disappears after quitting. Heartburn was also worse in smokers, however, it took about 11 years for that effect to wear off after quitting. It also explains that other studies were smaller or poorly categorized smokers, and thus led to the errant impression at times that smoking might be good for scleroderma.  But of course, such a happy thought was too good to be true, and alas, further research seems to have proven it wrong.

     

    :hug-group:


  20. Hi Lesley,

     

    Welcome to Sclero Forums. I'm sorry your friend has scleroderma and cancer, too.  Unfortunately, as Jo mentioned, there is an increased incidence of cancer with scleroderma, so it's not entirely unheard of. 

     

    As I understand it, the usual approach is to treat the cancer as it is usually treated. Generally, it poses a greater threat to longevity than scleroderma does. Cancer treatment would of course be coordinated with her scleroderma expert, too. 

     

    Stress is bad for scleroderma, and cancer can't help but be a stress, so it would be doubly important to do everything possible to alleviate as much stress as possible. It's extremely hard to focus on pleasant, happy things when life is so disrupted by illness. If you can, try to help your friend keep in touch with the lighter side of things; serious illness doesn't mean staying serious all the time, especially when we need laughter, more than ever before. Movies, books, hobbies, any distractions that you enjoyed together before -- try to remember to still enjoy them together now. 

     

    :hug-group:


  21. Hi Grandma Boo,

     

    Welcome to Sclero Forums!  I'm sorry it's taken so long for you to get a diagnosis. But I think now things will start falling into place for you. As you get the various symptoms treated, especially the hypothyroidism and the sleep disorder, it may very well ease the cognitive issues you are experiencing. 

     

    Give yourself some time to adjust, and to get your various symptoms treated properly. I've had varying amounts of cognitive issues and brain fog, which has mostly been laid up to concomitant fibromyalgia, which commonly overlaps with scleroderma and other autoimmune diseases.  My cognitive issues improved a lot with treatment for hypothyroidism and sleep disorders, plus reduction in stress and ample rest.  

     

    Still, when I'm tired, for whatever reason, real words simply escape me and I'm left with very lame descriptors, such as "that thing you turn pancakes over with".  At my sickest, "dishwasher" was my favorite substitute noun. As in, "Oh, no, I forgot the check writer in the dishwasher!" Which of course would mean that I forgot the checkbook in the desk.  The difference between this and Alzheimer's sorts of stuff is that we are painfully aware and bothered by the slips, and they magically clear up when we are well rested. 

     

    Happily, I've only gotten better over the years, instead of worse. However my loved ones are going to have a miserable time trying to figure out if I ever do develop Alzheimer's, since I have such a well established, ditzy track record. 

     

    Try to relax and have fun with it, because worrying about it only increases stress, which disrupts sleep, and here we go again. Perhaps use it as a sign that you should be resting a bit more, maybe adding some more naps or quiet time into your daily schedule. Alleviating stress is always good for all of us! 

     

    :hug-group:


  22. Hi KeroYosh,

     

    Welcome to Sclero Forums. Please keep in mind I'm not a doctor and verify everything with a reliable medical source.

     

    Jo very nicely explained the two main types of systemic scleroderma. There are also two main branches of scleroderma, localized and systemic.

     

    Systemic doesn't have any color change to skin involvement, but Morphea, a localized form of scleroderma, has a color change to affected skin.

     

    The part of the body Morphea affects has nothing to do with its severity. Also, Morphea is not fatal. It often clears up on its own in three to five years, without any treatment.

     

    It is also quite treatable. The first line of treatment is what is called UVA1 Phototherapy. It's a lot like a tanning lamp but with special wave lengths.

     

    A board certified dermatologist who specializes in skin diseases may be likely to sort this out for you. In the U.S., many scleroderma experts only see those who have the systemic variety, but a few clinics treat both.


  23. Hi Greg,

     

    Welcome to Sclero Forums!  Please keep in mind that I'm not a doctor and have no medical training at all, and verify everything I say with a reliable medical source.

     

    As it happens, lung involvement occurs with systemic forms of scleroderma, so your breathing problems may be related to something other than morphea. I would recommend that you see your primary care doctor about referral to a pulmonologist.  Please see: Morphea Scleroderma.

     

    There are many treatments for lung conditions, depending on exactly what type of lung involvement you have.  But please do not just write this off to morphea, as that would be highly unlikely, and it may be either a lung, asthma, and/or heart problem, as many things can cause shortness of breath. 

     

    Also, you may really want to consult a scleroderma expert who also treats localized (most of them specialize in systemic so preview the link Jo gave you carefully), because you may want to have your treatment program evaluated. Generally speaking, UVA1 phototherapy is the first line treatment for morphea now.  Please see: Morphea Treatments.

     

    Please stay in touch and let us know what you find out. 

     

    :hug-group:

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