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Shelley Ensz

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Posts posted by Shelley Ensz


  1. Renvy, this is difficult, because of course, we are not doctors and cannot diagnose or, certainly, treat anything simply via the internet. It is very important to consult a doctor who can tell you exactly what type of scleroderma your son has. It is most likely morphea, simply because that is most common in children, but it is worrisome that you say the skin over his whole body was thickening, which would more likely be systemic.

     

    We do not recommend any severe diet restrictions (such as eating only vegetables) for anyone with scleroderma, and particularly not for a young, growing child, because regardless of type of scleroderma, he will need a full selection of nutrients for his immune system to function properly.  I hope that you can find some medical advice and follow it.  Even if you can only find a local rheumatologist to help, or find the biopsy results, that would be a step forward.

     

    You may be able to figure out what type he most likely has, and thus what doctor to see, by looking at the videos on our main site about the various types of scleroderma. For example, morphea occurs in colored spots; linear causes an indented line of skin; and with systemic there is no color change, but simply a hardening that occurs on both sides of the body at once, usually starting in the fingertips and going upwards from there.

     

    If he has colored spots of hardened skin, then it is likely morphea; and that is the kind that UVA1 phototherapy is particularly good to treat.  See Scleroderma Videos now.

     

    Please remember, we are not doctors. This information is only to help you find the best local doctor to help care for your son.

     

    :hug-group:


  2. Hi Renvy,

     

    Please note that the resources that Jo pointed out to you are for systemic scleroderma and diet. There are no diet recommendations for morphea (or, the localized forms of scleroderma which include morphea, linear and en coup de sabre).

     

    We strongly suggest that you consult a dermatologist, because morphea is quite treatable, particularly with phototherapy (which is like a sun tanning booth).

     

    There's no food that will make a difference for morphea, other than the usual well-balanced diet that doesn't eliminate any major food groups (for good health in general) or whatever his doctor recommends in his particular situation.

     

    :hug-group:


  3. Hi Jo,

     

    Thank you for all the fabulous news research that you do for us, for the main site and the forums!  This little article is particularly interesting, because until now, the gold standard for diagnosis of pulmonary arterial hypertension has been a right heart catheterization, which is a very invasive procedure that carries some risk, especially in people with scleroderma, who are already quite sick.

     

    It's delightful to think that a blood test might be able to identify PAH. It could save so many people from an unnecessary procedure, and more quickly get those of us who are affected into an appropriate treatment plan. 

     

    I hope we see this particular research blossom into a larger study!

     

    :hug-group:


  4. Hi Nurse4Life,

     

    Did you look through our list of scleroderma experts for your daughter? In particular, there are two scleroderma centers in Pennsylvania that treat all ages and all type of scleroderma, so that might be a good place to start.

     

    Be sure to consider all aspects before pressing for a diagnosis.  A diagnosis of systemic scleroderma makes a person uninsurable for life, for things that you wouldn't think of normally for a child, such as life insurance (and, in some countries, health insurance.)  What matters the absolute most is that symptoms are treated as they arise. Also see our Diagnosis of Scleroderma resources, and note that the symptom requirements for diagnosis, such as tight skin and pulmonary fibrosis. Often, the disease can be strongly suspected but not yet proven for diagnostic purposes.  But, if I were you, I'd consult an expert.

     

    Even if it's too early for firm diagnosis, it's not too early to get a baseline and be regularly monitored.

     

    :hug-group:


  5. Hi Renvy,

     

    Welcome to Sclero forums.  I'm sorry your son has scleroderma and send my best wishes to you.

     

    As it happens, when children are affected by scleroderma, it is usually the localized form, such as morphea or linear scleroderma. These types usually affect only the skin (and not the internal organs, like the systemic type of scleroderma can.)

     

    There are no dietary treatments for scleroderma. Morphea is now considered to be very treatable, and UVA1 phototherapy is now usually the recommended first line of treatment.  See our resources on Morphea Scleroderma.  Often, morphea spots will fade on their own in three to five years, even without any treatment. However, when the lesions are over a joint, they can impair the growth of the limb, so it is important to get treatment.

     

    UVA1 is a concentrated form of light. It is a lot like a suntanning booth, and the equipment is often found in large dermatology offices.

     

    :hug-group:


  6. Hi Smb,

     

    I think it would be appropriate for you to schedule an office visit so that you can discuss the test results with your rheumatologist, and see whether they want to do additional baseline testing, or perhaps even begin treatment of some sort. 

     

    It's not always necessary to treat scleroderma, usually symptoms are just treated, especially in the beginning stages. But if you haven't had a full round of baseline testing (for heart, lungs, kidneys), now would probably be a good time to schedule it.

     

    Bear in mind that your symptoms are far more important than your blood work, as Jo said. If your rheumatologist isn't a listed scleroderma expert you may want to discuss with them a possible referral to a scleroderma center.

     

    :hug-group:


  7. Hi Kathy,

     

    I'm sorry you have Grave's disease on top of everything else. Generally speaking, if you have the radioactive iodine therapy, you will likely become hypothyroid sooner or later, but that is very treatable and better than suffering from Grave's. One caution is that this treatment could make eye involvement worse, so be sure to discuss the full range of treatment options with your doctor.  See Grave's Disease Treatment by Mayo Clinic.

     

    It's delightful that you're also focusing on the silver lining of the doubly-whammy of Grave's plus divorce. A clean house is a terrific bonus, and as you know, one that is often hard to come by with chronic illness. You go, girl! :yes:

     

    :hug-group:


  8. Hi Cathy,

     

    Ir's common for scleroderma to stabilize, so it's usually safe to figure that if it's not progressing, then it's probably stable or even improving. The only caveat is, never skip your recommended follow-up appointments just because you feel fine, because occasionally some things can progress silently. So, overconfidence is silly with this disease, but I doubt that will be a hazard for you.

     

    Ask your doctor what symptoms you can safely ignore, and when you should seek medical care. Our hearts are supposed to beat hard and strong under some conditions, like exercise or anxiety, so it's more a matter of what is in the realm of normal for you, with all your conditions. 

     

    You may even want to see if you are eligible for a cardio rehab program, where you can safely build exercise tolerance while being carefully monitored. Its very easy to get frightened from heart problems, and then avoid doing things that will make them stronger and healthier. It's good to relax and truly enjoy the pleasant spells when symptoms relent a bit.

     

    :hug-group:


  9. Hi Kathy,

     

    I'm very sorry to hear that, for both of you.  Perhaps it will take a little more time...or perhaps its time to move on.  At least you'll have the confidence of knowing that you tried your best and did everything you could, on your end.

     

    Quite often, our best just isn't good enough, or it's only good for just so long. Even the rich and famous and wealthy and healthy often suffer relationship difficulties, so imagine the stresses for those of us who aren't rich and famous and wealthy and healthy.

     

    I wish I could comfort you. How about a great big warm hug?

     

    :hug-group:


  10. Hi Ralph,

     

    Your symptoms would definitely be something to see your doctor about. Usually facial sagging is due to other things, such as a stroke or Bell's palsy.  If it was scleroderma, such as en coup de sabre, the onset is typically a slow and progressive development.

     

    In any event, please see your doctor, and let us know what you find out.

     

    :hug-group:


  11. Hi Cathy,

     

    Generally speaking, if you are wondering if you are improving with treatment, look to your symptoms for the answers, and not to lab results.  Blood tests can be erroneous (up to 20% of the time) and even misleading sometimes (indicating you are either better or worse than you actually are.)

     

    Look at the really big picture, such as how you felt overall before you started treatment, how you think you'd be doing without any treatment at all (if you were on a decided downhill slide beforehand), and how you're doing now.

     

    We tend not to notice things like a disease that has stabilized, or that has quit progressing, because we want to be restored to perfect health. So it is easy to look a gift horse in the mouth when it comes to treatments, and to be a bit unaware of how they have truly helped.  And then again, of course, some treatments just don't help at all, the side effects are worse than the disease, and they need to be stopped.

     

    How do you assess things, apart from the lab work?

     

    :hug-group:


  12. Hi GJG,

     

    Welcome to Sclero Forums. I'm sorry you have scleroderma, that it has onset so quickly, and disrupted your life and livelihood so fast.  It is an enormous adjustment to make, in a short period of time, as I'm sure you're realizing.

     

    As Jo suggested, seeing a (real, listed) scleroderma expert is the first thing to do. You'll feel a lot better just having them to answer some of your most critical questions, and to guide your care with state of the art advice. They are typically great at working along with your local rheumatologist. It will also give you access to any clinical trials you might be qualified for.

     

    It's too much to take in all at once. All of us have felt overwhelmed at first by scleroderma, even without any medical training at all. You'll have a tiny bit of advantage, at least being familiar with the terminology.

     

    From the "when life hands you lemons make lemonade, and lemon cookies, and lemon pie" school of thought....Scleroderma can also affect the mouth, so perhaps down the road you could help expand our resources on Scleroderma Dental Involvement. Very few dentists are interested in this realm (because it is so rare) so any documentation or awareness raising you could do on this score would be greatly appreciated! 

     

    :hug-group:


  13. Hi Sugarplum Fairy,

     

    Pulmonary fibrosis shows up on x-rays and CT scans of the chest, which either show inflammation (the ground glass that Jo had) or fibrosis (hardening) of the lungs.  If it is caught in the inflammatory stage, like Jo's was, it is treatable. 

     

    Skin sensitivity and calluses are not symptoms of scleroderma. Although a callus is a type of skin thickening, it is different than the hardening caused by systemic sclerosis, which is preceded by swelling and then gradually hardens into a smooth and shiny appearance, typically starting in the tips of the fingers and moving upward from there.

     

    As I understand it, the hand pain with scleroderma is most prominent during the swelling and inflammation stage. Offhand, I don't recall hearing anyone complain of significant hand pain for a long time prior to the onset of other symptoms (like swelling, Raynaud's, carpal tunnel, etc.)

     

    For ANA, a speckled pattern is much more common in lupus, whereas scleroderma tends to be more of the nucleolar pattern. But keep in mind, blood work can be false positive (or false negative) so it is the specific, proven symptoms that are paramount in diagnosis of connective tissue diseases. About 3 to 15% of healthy people have positive ANA, so the presence of antibodies does not guarantee the presence, or eventual development, of disease.

     

    :hug-group:


  14. Hi Sugarplum Fairy,

     

    Welcome to Sclero Forums. I'm sure you know by now that we aren't doctors, and the vast majority of us, including me, don't even have a valid first aid certificate.

     

    I'd refer you to our resources on Difficult Diagnosis, which includes videos and symptom checklists. But, without having any Raynaud's or tight skin or pulmonary fibrosis, etc. your odds of having scleroderma are probably slim to none.

     

    Since you do complain of some eye pain and some joint pain, and positive ANA, you might be tending towards some Sjogren's symptoms.  Bear in mind that about 50% of people who have a few symptoms of connective tissue diseases and positive ANA never go on to develop a full blown version of anything, so your diagnosis might always remain as being simply "arthritis".

     

    As to whether you are worrying too much, well, that really isn't a question for us. What they recommend is that if we are very bothered or upset for two weeks after receiving a serious diagnosis, or the worry of one, then we should ask our doctor about it. Anxiety and depression can emulate and complicate many illnesses; depression can even cause joint pain, fatigue, and troubled sleep. Anxiety can ruin our quality of life. And all unnecessarily, since at least those aspects of illness are treatable.

     

    Basically, most people might be able to say, huh, I must have some mild form of arthritis, so I'll have an annual physical so that they can keep an eye out for any internal organ involvement. If your reaction is more than that, then worry can exacerbate symptoms, so acquiring some additional coping skills could help regardless of whether your symptoms ever worsen, or not.

     

    Time will tell what's going on. If I recall correctly, Sjogren's usually takes an average of ten years to be diagnosed. That's because symptoms are generally fairly mild, slowly progressive if at all, and usually easily self-treatable, such as by eye drops or moisturizers or NSAIDs. One thing you could do for that is to have your eye doctor do a Shirmer's test for dry eyes. It's painless and is not invasive; it's just a tiny bit of paper put in the eyelid for a few minutes to see how wet the paper gets. Flunking Shirmer's isn't fully diagnostic of Sjogren's, but it is one little piece of the puzzle.

     

    Worrying or excessive doctoring isn't very likely to speed up the process, in fact, it can entirely derail it if your doctors tag you as (an untreated) worrier, they may dismiss all your symptoms, or figure that you are exaggerating them. So, the more you can prove you have your emotional reaction under control, the better.

     

    Also, cut yourself some slack for being suspicious and concerned and for trying to get answers. It sounds like you and your doctors have ruled out any imminently life-threatening illness, as you are not complaining of heart, lung, kidney or liver involvement, nor signs of pervasive cancer, and you can even safely rule out rapid onset of severe diffuse scleroderma, too. 

     

    So, although some arthritis may be setting in -- which is a pity, of course, but it is usually quite manageable -- you are joining a crowd of millions and mlliions of people worldwide in that regard, so hopefully you will not feel quite so alone in the process, and quickly find your stride in coping with it successfully. At least, we all surely hope so!

     

    :hug-group:


  15. Hi Jeremy,

     

    Welcome to Sclero Forums. I'm sorry you have scleroderma, and pancreatitis.

     

    Pleae keep in mind that I'm not a doctor, and I have no medical training at all. How I'd look at this is, that you are doubly susceptible to alcohol triggering another round of pancreatitis, because then you'd have two triggers at once, both scleroderma and alcohol, and together, your risk for recurrence might be through the roof.

     

    Alcohol can also be hard on the liver and kidneys, which are also at risk with scleroderma -- in two ways, actually. One is that scleroderma may affect them, and another is that the various medications you need to take now -- or later -- may also stress the liver and kidneys. 

     

    If despite the risks, if you still choose to drink, you may want to consider moderate consumption of red wine, which may help to reduce attacks of Raynaud's, according to some studies. But alcohol, nicotine, and caffeine can all trigger or worsen Raynaud's, so consider what your own reaction is. With digital ulcers, you run the risk of amputation, and that could take all the fun out of a social drink or two.

     

    With the increased risk to your pancreas, liver and kidneys, you may want to discuss the whole matter with your scleroderma expert.  It's not giving up or giving in or succumbing to the illness to try to make the wisest decisions to live longer or healthier. Sure, a drink or two may be enjoyable, but organ failure could possibly take some of the fun and length out of life, too.

     

    Do take a moment to ask yourself if you might be trying to "use" alcohol in any way, such as for a painkiller, a sleep aid, or to try to avoid issues, such as declining health. It's easy for all of us to misuse alcohol as a crutch.

     

    I've found that reliable sober drivers are always in demand socially, so bypassing alcohol seldom puts a real dent in our fun.

     

    :hug-group:


  16. Hi Alone,

     

    Welcome to Sclero Forums.  I'm sorry you have confusing symptoms and diagnoses.  It's actually fairly common for lupus and scleroderma to occur in overlap, or for either disease to occur in overlap with other diseases.  It's common for both diseases to take many years to be diagnosed, and for them to also be mistaken for each other, too.

     

    I have multiple autoimmune syndrome (MAS) so I know how confusion can reign supreme as symptoms and bloodwork change. It's also common for relatives of people with autoimmune disease to exhibit antibodies and symptoms of any autoimmune disease, without necessarily ever getting a full-blown version of it.

     

    You're not exactly alone in the universe anymore, since millions of people worldwide have autoimmune and connective tissue diseases, and millions are also in a quandary as to their diagnosis -- typically, for many years, as the ailments are so difficult to sort out and diagnose. Plus, even years later, the diagnosis can still be subject to change, or even for the illness to go into remission.

     

    Anyway, welcome to the forums. You can relax now, not feel so alone, and let go of the confusion. It's normal for this to be confusing and neither you nor your doctor are doing anything wrong.

     

    :hug-group:


  17. Hi Wilson,

     

    I'm sorry you also have diastolic dysfunction. It's one of those things that is quite common, in that a Mayo Clinic study showed that 21% of people over age 45 have it; and, it can also occur in scleroderma (which is a more rare cause of it, because scleroderma is much more rare, of course.)

     

    It's a good thing to get diagnosed, and to take proper care of. It can be caused by coronary artery disease or by hypertension so those factors are often treated with blood pressure medications, diuretics, and sometimes even aerobic exercise to improve heart function. Keep on working with your cardiologist, of course.

     

    As I understand it (and I am not a doctor; I have no medical training at all), there is no different treatment for it, even if scleroderma is an underlying cause.

     

    I know how you feel about not wanting to have any particular diagnosis, but being glad to have any accurate diagnosis. Simply because, it's accurate and true!  And who knows, maybe someday various things may help solidify an umbrella diagnosis.

     

    :hug-group:


  18. Hi Kathy,

     

    I've never heard of a caregiver pact, so I don't know what you mean, exactly.  Do you mean like for the care of children?  Most issues surrounding death could be handled in a will or a Living Trust, including arrangements for children or pets (if necessary).

     

    I agree with Amanda. It it's possible, you may want to consider the idea of not trusting this situation to antidepressants alone. If it's possible to include individual and joint counseling, that might maximize the growth and happiness out of any disruption. It's nice for things to be a bit better now, but it'd be fabulous for things to still be going strong ten years from now, as an outgrowth of this period of reflection and change.

     

    Oh, and there is one thing I'd like to add, if you don't mind. The usual marital pledge is "for better or worse, in sickness and in health, til death do us part", because nearly all of us get sick, and none of us get out alive.

     

    All of us are going to get sick or die someday. Your husband could be run over by a truck tomorrow, for all we know -- and you hardly deserve that, do you?

     

    It's for that reasoning that I personally would prefer not to ever give nor accept blame for being sick. I like to turn to good counselors when I can use gentle guidance to resolve issues like that. Sometimes a fresh perspective can assist with introducing more acceptance, peace, love, joy and happiness, at least, in my experience. And you certainly and richly deserve that, after all you've been through!

     

    :hug-group:


  19. Hi Wilson,

     

    I do know, in many ways, what you are feeling, as I've suffered extremely delayed diagnoses over the years. Several times, I've felt completely exasperated by it.

     

    At one point, I read that about 40% of lupus cases were diagnosed by autopsy. I really don't know if that is true or not, as I haven't found that reference since.  What I do remember though is that I adopted as my slogan, "I refuse to be diagnosed by autopsy!"  Sometimes that rallying cry was the only thing that got me out of bed or gave me the courage to face yet another test.

     

    It's taken literally a lifetime for me to be mostly diagnosed, as I have multiple autoimmune syndrome (MAS) with all sorts of overlaps, which has been endlessly confusing both for me and my doctors.  So, on that hand, I know how extremely difficult some autoimmune diseases can be to get properly diagnosed.

     

    On the other hand, my late husband had a variety of things that emulated scleroderma, yet beyond the shadow of a doubt he did not have scleroderma or any autoimmune disease. He had alpha-1-antitrypsin deficiency (A1A) which caused him to have severe lung problems at a young age. Eventually he had a lung transplant. 

     

    So he was on oxygen for many years. But other than that, he also had severe esophageal ulcers and strictures, and had to have his throat stretched regularly. His heartburn was so severe that he had to have Nissen Fundoplication surgery. He had severe sleep apnea; costochondritis; atrial fibrillation; short-term insulin dependent diabetes from prednisone; osteoporosis; recurrent cellulitis; collapsed lung; ruptured Achilles tendon; and even Dupuytren's contractures in both hands.

     

    Everything other than the lung involvement was due to either the usual effects of aging or the side effects of medications. There was absolutely nothing (other than A1A) systemically wrong with him, and I can assure you that every test known to man was run prior to his transplant.

     

    So it's kind of funny. People can have only a few little things wrong with them but clearly have an autoimmune disease but a rosy prognosis, yet others can have dozens, of things wrong with them at once and not have any underlying disease process that is driving it -- other than aging, which is a mighty adversary all by itself, never to be underestimated.

     

    Please keep in mind that it is NO LESS SICK (and certainly, no less important) to have symptoms without a cohesive underlying illness, than it is to have the same symptoms without such an illness. Maybe the prognosis is sometimes better for people without an underlying illness. But all of us, healthy or not, have one thing in common which is that we suffer from a condition called Life, which is always, and inevitably, and unpredictably, fatal, whether by disease or accident or foul play.

     

    I suppose in the end, all of us actually get our final diagnosis by autopsy. But oh, so little, and so absurdly late!  It is today that we wish to know exactly what ails us, so that we can thus try to thwart our final diagnosis by a few days or weeks or months or years with proper care.

     

    Hopefully through our Sclero Forums, we will all find the strength to face another day with courage, with grace, with laughter...whether with or without any particular diagnosis at the moment, knowing that we all share the prognosis of Life together, along with all of its joys and blessings, and uncertainties.

     

    :hug-group:

     

     

     


  20. Hi Wilson,

     

    Welcome to Sclero Forums!  I'm glad you found us for support as you continue to deal with the question of whether or not you have an underlying disease that is causing your symptoms.

     

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

     

    As it happens, about 50% of people who have a symptom or two of connective tissue disease (CTD), or even some antibodies too, never go on to develop a full-blown diagnosable CTD.  Also, with age, we can all acquire a variety of symptoms as our bodies inevitably display the effects of wear and tear (whether or not we have an underlying illness.)

     

    It does sound like your doctor is taking your symptoms seriously, and running appropriate tests. Scleroderma would be only a rare cause of diastolic dysfunction. Dehydration can cause thirst as well as worsen kidney levels, so please make sure you stay well hydrated (but not over-hydrated, of course).  And be sure that you have regular screenings for diabetes, which can emulate scleroderma in many ways (including the face swelling and thirst.)

     

    A scleroderma expert might be able to help you sort things out, as in tell you whether you have scleroderma already or tell you what the odds are that you may ever develop it...or perhaps even see what else it may be, if it is anything beyond the scope of normal aging (which can raise all sorts of havoc, all by itself!)

     

    :hug-group:


  21. Amanda, you've totally cracked me up, yet again! :happy:

     

    Miocean, I hope you get to another waning then plateau stage again soon!

     

    I've experienced the waxing and waning myself, sometimes just through the natural course of the disease itself, and sometimes through various treatments. It's an emotional hurdle to leap across, each time we encounter the waxing bit again. It's such an uncertainty, knowing what it was like when it worsened before, wondering if this is going to be the final downturn, but also knowing that things -- a few symptoms, or all -- could improve at any moment. That's what makes scleroderma such a roller coaster ride, and while not exactly thrilling, it is certainly enough to make us want to scream at times, isn't it?

     

    I'm glad we have each other, for comfort when the going gets tough or tougher, and for rejoicing together when things get a bit mild or milder. Fasten your seatbelt, follow expert advice, enjoy life as much as possible plus a bit more than that -- and then hang on for dear life, for scleroderma may be an interesting ride, but very seldom is it a boring or easy one!

     

    :hug-group:


  22. Hi Judy,

     

    I'd recommend that you advise her to consult her scleroderma expert about this. In scleroderma, the immune system is in overdrive (as opposed to AIDS, in which it needs to be boosted.)  So the goal in scleroderma is typically to regulate the immune system, which often requires immune suppressants.

     

    Exercise has been shown to increase inflammation in systemic sclerosis, so a health kick that entails excessive exercise could provoke rather than ameliorate symptoms.  See Exercise in systemic sclerosis intensifies systemic inflammation and oxidative stress. PubMed, Scand J Rheumatol, 2010;39(1):63-70.

     

    However, some "health kicks" may be beneficial, such as adopting an anti-inflammatory diet. It's great that she wants to take responsibility for her health and is willing to exert effort on it!  However, hopefully some of that effort will also entail consulting and listening to her scleroderma expert, as well. See Diet and Systemic Scleroderma and Supplement Guide for Systemic Scleroderma on our main site.

     

    :hug-group:

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