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Shelley Ensz

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Posts posted by Shelley Ensz


  1. Hi Margaret,

     

    I'm sorry that you've had the worry over positive ANA, but I am glad that you were fortified enough to deal with it thanks to your participation in the forums all these years for Gareth. Imagine how much scarier it would all be, if you didn't know about false positives and the importance of symptoms when it comes to autoimmune disease. I hope things go well with the remainder of your tests, keep us posted.

     

    Jo, I shouldn't laugh over the horse doing the "hokey-cokey" on your foot but I really can't help chuckling from how you phrased it. Your lively sense of humor takes the sting out of so many things, doesn't it? 

     

    I'm also very grateful for the ISN and for the truly marvelous people, both those who help in a million different ways, and those who hang out here. It makes and keeps this a very special internet cubby hole, doesn't it?

     

    :hug-group:


  2. Hi Jo,

     

    I really miss Janet. I'm so sorry to hear this. She was a wonderful friend, faithful volunteer and loyal and ever-supportive Sclero Forums member. She was such a delight, and an amazing artist, leaving a beautiful legacy with her paintings that she donated to decorate some of our main website pages.

     

    I send my sympathy to all her other friends and family. We all feel your loss and your heartache.


  3. Hi All,

     

    We are just now starting to emerge from the dog days of summer, and a traditional time for our forums to be sort of on vacation. People are enjoying the last of summer, usually a bit of respite from heat, and are getting ready for the school year.

     

    It's also an excellent time for members to post any questions or issues that are on their mind, as your posts are likely to receive more time and attention from those of us who are not vacationing or readying for the school year.

     

    So, what questions do you have about living with scleroderma? Do you manage Raynaud's now, better than you used to?  Do you have any tips to share for dealing with fatigue? Whatever is on your mind, the dog days of summer are a perfect time to bring them forward!

     

    :hug-group:


  4. Quiltfairy, thank you for raising awareness of the talk to text feature, and how it may be very beneficial for scleroderma patients, or anyone who can't type or whose hands are impaired.

     

    It is a marvelous aid that can re-open the door to more involvement and communication, and the programs now are so much better than when they first launched!

     

    :hug-group:


  5. Hi Peter,

     

    It's delightful that you don't stress out over everything. Yes, non-tb mycobacteria can be very hard to treat.  I hope the hospital has some answers for you soon, to help guide your treatment decisions.

     

    :hug-group:


  6. Hi Peter,

     

    I'm sorry you are having additional complications. If I were you, I'd get a second opinion before jumping straight to steroids for muscle and joint pain, especially when it is of such recent onset. First, look at all your medications to see if that is a potential side effect. A common culprit for that is statins (cholesterol medications) or many other medications with muscle and joint pain as a side effect.

     

    It might also be the onset of fibromyalgia, which is very common with scleroderma. Or it could be that you are going through a stressful time, and not sleeping very well, and the fallout from that is aching from head to toe. In any event, since this is new, first look to medication side effects or any recent changes in your lifestyle (such as stress, or perhaps even stopping a regular exercise.)

     

    As Jo pointed out, its not the best idea to rush to steroids, especially with scleroderma. See Warnings for Steroids and Scleroderma, because steroids strongly increase the short term risk of developing scleroderma renal crisis (sudden kidney failure).

     

    So many other things could be tried first, such as improving sleep, stretching or exercising or warm pool classes, pain medications, massages, antidepressants, muscle relaxers, relaxation or meditation programs....why, the list goes on and on, and most of us use a combination of several if not many things to address muscle and joint pain.

     

    You've just had the whole stress of possible lung infection and difficult questions regarding possible treatments added to your plate. That's quite a stressor, too, and probably won't do anything to improve your relaxation and sleep (and thus, it may increase your joint and muscle discomfort.)

     

    I'm unable to take any steroids, even apart from scleroderma issues, and have managed widespread and chronic joint and muscle pain for decades without steroids. So, I know it's possible, even though steroids are certainly a very fast shortcut, in the long run, they can be quite troublesome, especially with scleroderma. Such as Jo, who has had to have two hips replaced just in the last year.

     

    I also count myself lucky to be unable to take steroids. I'm positive a single dose would have me hooked forever, as it would be a single source for relief (rather than the more complicated steps of sleep evaluations, plus other medications and many lifestyle changes) and I imagine it would be instant, as well. So then I'd spend my remaining days incurring kidney failure and joint replacements....of that, I have little doubt.

     

    Pay very close attention when you are being counseled regarding treatment, and take the time you need to make a proper decision. Some things truly are better off not treated, because sometimes the risks of treatment really are worse than the risks of the disease.  Especially as we age, we are more likely to encounter ailments that we are better off trying to just live with, as long as possible, rather than tackle them head-on.  But, you don't hear people talk of these issues much, for as a society we tend to go all-in for any treatment that exists.

     

    I myself have chosen to not have some things treated, yet have gone all-in for treatment of other things. It's helped me to ask my doctor, if it was them, or their loved one, would they attempt this treatment, under these same circumstances?  A surprising number of doctors would personally forego treatments that they are still obliged to offer to their patients.

     

    I'm sorry, I don't know why I'm going on and on about this.  Except to say, I appreciate that you will be faced with many decisions. Some may have easy answers, some not. Who knows, maybe you could even try the steroids at low dose for a few weeks, just to get the worst of the fires put out, while you work on getting other approaches ready, such as perhaps some good sleeping and pain meds, or enrolling in a warm pool class.  Just be aware to do your best, working with your doctors, to try to avoid relying on high dose or long term steroids for your condition -- if it's reasonable and possible, under the circumstances. 

     

    And please bear in mind, none of us, particularly me, are doctors, and we should not be guiding your medical decisions; rather, hopefully just giving some food for thought or to discuss with your experts.

     

    :hug-group:


  7. Hi Margaret,

     

    It would be a good idea to get Gareth in to see his gastroenterologist, to determine what is happening, and whether anything can be done about it.  Bowel incontinence can be caused by many things, including neuropathy which can occur with both Downs and scleroderma (and other illnesses, of course.)

     

    In the meantime, would it be possible for them to try to have him go to the bathroom on a regular basis, such as near the time he usually has issues?  For example, one or two timed breaks in the morning and/or afternoon, which might help it be less of such a surprise attack.

     

    I'm so sorry he's having more issues. Be sure to give him another big warm hug from me! :hug-bear:

     

    :hug-group:

     

     


  8. 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:


  9. 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:


  10. 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:


  11. 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:


  12. 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:


  13. 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:


  14. 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:


  15. 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:


  16. 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:


  17. 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:


  18. 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:


  19. 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:


  20. 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:


  21. 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:

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