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Shelley Ensz

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Everything posted by Shelley Ensz

  1. 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.
  2. Shelley Ensz

    Diagnosis dismissed

    Hi Faye, 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.
  3. Shelley Ensz

    Sine Scleroderma

    Hi Beckybee, Welcome to Sclero Forums! I just want to say hello and that it's nice to meet you.
  4. 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).
  5. 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.
  6. 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.
  7. 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.
  8. Shelley Ensz

    So many questions!

    Hi Madison, Welcome to Sclero Forums. It sounds to me like you need to go back to your rheumatologist and have a more in-depth discussion of exactly why they prescribed methotrexate for you and to explain any and all of your concerns about it. Scleroderma can cause problems from stem to stern in the G.I. tract, often causing heartburn or motility problems in the esophagus, stomach, and/or bowels. See Scleroderma Gastrointestinal Involvement on our main site. The fact that nothing showed on your colonoscopies, etc. is great news, in that it means you don't have cancer, ulcerations, blockages, etc. Irritable bowel syndrome (IBS) is diagnosed after all the other conditions are ruled out, one way or another. About 1 in 5 people have IBS and the vast majority of them do not have scleroderma (which I'm mentioning for everyone with IBS who google up this page.) Probably your best path forward would be to consult a listed scleroderma expert, because most normal rheumatologists may see only one or two cases of scleroderma in their entire career. "Scleroderma blood work" can be positive in many other diseases as well (depending on the precise autoantibody). An expert can also make sure you have all the baseline testing, and will work with your local rheumatologist to assure you of the best treatments or clinical trials.
  9. Shelley Ensz

    Pansclerotic Morphea

    Ejtauri, you know, a fun thing to do might be to document the whole process involved in getting your UVA1 equipment. Like, take photos of the equipment set up, explain things from the patient's perspective. Nobody around here has done that before. Also, if you're game, you may want to consider donating some pansclerotic morphea photos for our ISN Photo Repository.
  10. Shelley Ensz

    Pansclerotic Morphea

    Hi Eric, Welcome to Sclero Forums! Yeah, you scored really rare form of really rare disease...apparently without even passing "Go!". It only took me a few weeks to get my home UVA1 unit, through insurance. The key is the doctor submitting the form quickly and properly. Once I received the unit, they sent out an installer from the factory to unpack it, set it up, and verify the settings. I'm fortunate in that with my insurance and Medigap, it was covered 100%, because I had a verified diagnosis that UVA1 is indicated for (as I'm sure it would be for pansclerotic morphea, as well.) To find UVA1 factilities, you need to call and call and call. Try the largest medical centers and the largest dermatology clinics. And really press them for thorough answers. The doctor that is in that facility will also need to verify the condition and treatment plan. I must warn you, nearly every place that I called that said they had UVA1 in reality had only UVB. So learn the difference yourself to be able to query them properly. Also see: Pansclerotic Morphea and UVA1 Phototherapy.
  11. Shelley Ensz

    Scleroderma fears

    Diantha, welcome to Sclero Forums. It's been about a week. Do you have any test results back yet? How are things going for you, in general?
  12. Shelley Ensz

    Fearing Dentist Appointment

    Hi Barefut, The guidelines about antibiotics for dental work are being continually changed as more detailed research emerges. I used to have to take premeds for dental work due to mitral valve prolapse. Then, they decided, not. Now I have to take premeds for dental work for another condition, and to be on the safe side, my dentist even has my doctor sign off on procedures beforehand. Last week it was root planing. Next week will be another tooth pulled. That's pretty much par for the course when Sjogren's and scleroderma are your tooth fairies. You're situated differently, being in a small town. But if you were in a larger metropolitan area, I'd encourage you to shop around for a dentist. Years ago, I went to a hospital dental school clinic that was only for people with severe illness. That was heavenly, as they were very helpful and they became quite knowledgeable about scleroderma, too. Happily, it also cost a lot less than a regular dentist. Lacking that, I recommend that people with scleroderma mouth involvement look for a Family dentistry practice that practices Digital Dentistry -- and one that works on kids, too -- because they have child-size equipment like tooth rests and they are used to working in small mouths. Many more tips are in our section on Scleroderma Dental Involvement.
  13. Shelley Ensz

    Why do we panic?

    Hi Stcherry, Welcome to Sclero Forums! It's such a catch-22 when you think you may have an illness like scleroderma. It's like, oh dear, I hope I'm wrong, and on the other hand, I hope I'm right! But really, I want to be wrong about this one! But it'd be embarrassing to be wrong. However, bring on the blushing if it gets me out of this predicament with nothing more amiss. Then again, if I have it, I do want to know. Except I really don't! But I'm here to say, either way, it's okay, Stcherry, and you've come to the right place for understanding and support.
  14. Hi Treesie, I just noticed that this is your first post. Welcome to Sclero Forums! I'm very glad you found us. You're an excellent example of living with chronic severe illness. It's not like it's been a walk in the park for you, by a long shot. But you've made it what, nearly 40 years, with scleroderma. I'm sure you'll have a lot of wisdom and tips to share with us in the months and years to come!
  15. Shelley Ensz

    Digital ulcer

    Hi Rag, You are right, it's been really hard for us to find resources for scleroderma in India. So far we only have one scleroderma doctor listed, who is in Pune. Here is the link to Dr. Patel http://www.punerheumatologist.com/ . Just remember, with digital ulcers, if they are not getting better, they ARE getting worse. That's not intended to panic anyone, of course. But it definitely is a reminder to not take an ulcer for granted, or skip any doctor appointments for it. The goal is to get it to heal, before it suffers infection, gangrene, or amputation. Scleroderma makes all those adverse outcomes more likely, so we can't afford to ignore any aspect of wound care. And I know it requires a lot of vigilance to treat even a small wound properly; especially ulcers that can be around for a long time, it is easy to take them for granted.
  16. Shelley Ensz

    Newly diagnosed, maybe.

    Hi Celine, Welcome to Sclero Forums! I'm sorry that both you and your daughter have health concerns. As I'm sure you know, we're not doctors, we can't diagnose, and I have no medical training at all. Obviously, you've already noticed that you don't have the typical scleroderma onset or symptoms. I may be wrong (I often am!) but you might want to read up about polymyositis. It hangs around on the illness spectrum near scleroderma, and it is the "PM" in the "PM/Scl" test. I happen to also be "very positive" so to speak with the PM/Scl-100 antibody. It turns out, mine was part of a wide-ranging overlap syndrome with many autoimmune diseases, including an overlap of scleroderma with dermatomyositis. Myositis refers to inflammation of muscles. Dermatomyositis in a way is easier to detect than polymyositis, because of distinctive rashes. It's always possible, of course, for our bodies to just deteriorate in many areas, without being driven by an underlying disease. But I do think you may need a real expert evaluation, due to the combination of the PM/Scl antibody and the muscle pain. There's not a whole lot that can usually be done for scleroderma (although that outlook is improving by the day), but the myositis angle -- if any -- could be treatable and could perhaps even improve your quality of life.
  17. Shelley Ensz

    Digital ulcer

    Hi Rag, Welcome to Sclero Forums! It's not possible for us to over-stress the importance of making sure you see your doctor and follow through carefully on treating any skin ulcer. Wound care centers can be very helpful, as well as working with your scleroderma expert to figure out ways to help avoid them, as much as possible, in the future (such as by making sure your Raynaud's is treated the best it can be; that you are taking steps to avoid injuries (like by staying warm, and protecting vulnerable areas by wearing protective gloves or socks). For me, I'm much more prone to toe ulcers than finger ulcers; and I find they generally take a lot longer to heal, too. I try to stay alert to the need to stay warm at all times, from head to toe, and to follow our Raynaud's Prevention Tips. But as you know, with scleroderma, stuff can still happen despite our best efforts. I have this mantra, "Superman died of a bed sore!" that I use it to try to keep up with my own best wound care practices.
  18. Hi Deanne, Welcome to Sclero Forums! I thought I'd just add that you might also be interested in our Forum Guidelines on Alternative Therapies, as well as our Autoimmune Food Guide, our Systemic Scleroderma Supplement Guide, and our Diet and Systemic Scleroderma guide. Here's an article you may be interested in, Apple Cider Vinegar...For Heartburn? by Harvard Medical School. The article concludes, "Since we have no data to support the effectiveness or safety of its use for heartburn, it's probably a good idea to stick to drizzling this deliciousness on colorful salads for now." Another caution is that absolutely nothing taken in excess is without side effects; even drinking too much water can be fatal. For example, see 7 Side Effects of Too Much Apple Cider Vinegar by Healthline. You'll notice the first item is that it can cause delayed stomach emptying, which can worsen symptoms of gastroparesis, which is a common gastrointestinal involvement in scleroderma. It can also damage tooth enamel, decrease bone density, and interact with other drugs. In short, I don't know how often we can say this, or in how many ways, but it is extremely important to discuss all diet and supplement ideas with your scleroderma expert. Or, how complex even the simplest thing can be, when scleroderma complicates the mix.
  19. Shelley Ensz

    New question

    Hi Quiltfairy, I'm a little bit confused, probably because lab ranges can vary so much. I think the usual normal range for CK is about 20-200 (thereabouts). Please bear in mind that I have absolutely no medical training at all, and verify all of this with a reliable medical source. IF that's the normal range, my doctors have never expressed any concern over blood test results that were within the Normal range, even when they're smack dab next to the abnormal range -- like 31 on a scale of normal from 30 to 1000, which I would think is, aha, some sort of a low, even though it's actually not; or even when they change drastically within the normal range, like going from 31 to 999, which you'd think would indicate something! But, what it typically indicates is that test result is Normal. Very often, I'll have results that are out of Normal range but still don't signify any additional health problem. And some of my tests are just always abnormal, simply due to established illness. Let's say your CK normal range is 20-200. In that case, an increase from 36 to 78 wouldn't be an issue, because it is still very much within a broad range of Normal. Then again, labs can vary tremendously, so what matters is whether your test result is flagged as abnormal in the printout and/or whether your doctor thinks it's an issue. First, you and your doctor need to seriously look at all the usual suspects for elevated CK and/or muscle weakness. If, for example, you're on statins and your doctor takes you off of them, and your muscle weakness resolves, it might be a case of problem solved. But if there are no easy answers, or no answers for the muscle weakness in particular, it would be suitable to have a full work-up. I might suggest that the nearest scleroderma expert to you that I know of would be Dr. Jerry Molitor at University of Minnesota. See our Scleroderma and Myopathy or Myositis resources. In short, I wouldn't be so much worried about the CK (if that's normal), but about the muscle weakness, which is not. If the CK doesn't nail the cause, more searching needs to be done.
  20. Shelley Ensz

    Methotrexate/ Natural Treatment.

    Hi Itay, Welcome to Sclero Forums! As you've likely figured by now, the risk of methotrexate side effects needs to be balanced against potential harm from the disease and the complications you and your doctor are hoping to avert or assuage. I'm assuming that your doctor is prescribing it for some type of vasculitis (please correct me if I'm wrong.) Methotrexate is a serious medication -- and vasculitis a serious condition -- so it's very important to be well-educated about both of them. Also, if you are not going to take the methotrexate, for any reason whatsoever, it's vital to discuss that with your prescribing doctor so that they can address your concerns and have the chance to discuss the risks/benefits as well as to possibly prescribe something else that you find more amenable. So, please, right now, either put in a call to the doctor to get any remaining questions asked, or start taking the medication exactly as they prescribed...because vasculitis can cause seizures, strokes, paralysis, kidney failure...all sorts of irreversible and even deadly outcomes, depending on the type and severity.
  21. Shelley Ensz

    A ramble. And, hello..

    Hi Heather, Welcome to Sclero Forums. I'm sure you'll be busy exploring the resources Jo gave you. I just wanted to say "hello".
  22. Hi Keevie, Welcome to Sclero Forums. It's possible yours might be related to the general scleroderma cause category of "stress". See Causes of Scleroderma on our main site.
  23. Shelley Ensz

    Loss of fingerprints.

    Hi Dolly, Welcome to Sclero Forums. I'm very sorry that you suffered third degree burns, and send my best wishes to you. As Jo suggested, please check with your primary care doctor about this. There is a chemotherapy drug, capecitabine, which can cause loss of fingerprints in cancer patients. So it would be worthwhile to research your medications, too. If it's due to a skin condition such as eczema or psoriasis, those conditions could be treated (but I don't know if it would restore your fingerprints.) Please keep in touch, and let us know what you find out.
  24. Shelley Ensz

    Undifferentiated Connective Tissue Disease

    Hi Kim, Welcome to Sclero Forums. I'm sorry you have UCTD. One thing many people don't realize in time is the potentially devastating effect of a new or chronic illness on all relationships, but most especially the closest ones, like marriage. I was extremely fortunate to get patient education classes,when I first became the most seriously ill. They pointed out the hazards our relationship faced and gave us the skills to improve our relationship rather than morosely sit and watch it idly self-destruct. Part of it was learning new ways to communicate, so as to get my needs met without being a constant drag. We began communicating with a number system, like I could just say my day was a "1" (in bed all day, wheelchair bound, managed to stay alive but that's about it) or a "10" (at the start, a "10" for me was being able to get showered with fresh pajamas. The scale would gradually change as my abilities went up or down). I learned how to ask very specifically for help, and never assume anyone knew what I needed at the moment. Rather than think, if he really loved me, he'd know I have a headache so he should keep the volume down, or do the dishes, or whatever. Turns out, that's a sure-fire way to end things quickly! Unless they are a certified professional psychic, there's no way any other person can know exactly what we want at any given moment unless we tell them precisely. So I learned to be direct, and say, as pleasantly as I could, "I'm so happy to see you! Today is about a 2 for me. Please do the dishes and keep things quiet around here, as best you can. Thank you for getting me my meds, I really appreciate it! I'll rest up, and hopefully we can go out to coffee tomorrow night." So it wasn't just about me; it's acknowledging them, thanking them, letting them feel like every little thing they do matters, because it surely does! Also, of course, I never lied or exaggerated about how my symptoms were at the moment, so he knew I was never trying to wiggle out of responsibility. It's painful to not be able to do what we used to. I had to learn a great many things to make a successful adjustment both for me and for my marriage. I supplemented that training with some personal counseling and every once in awhile, I go back to counseling, even now. It's impossible for any of us to get too resilient in the face of undesirable changes. I wish you well as you gather the resources to adjust to this life change. You can do it, absolutely -- but I must say, I've seen all too many fantastic good-hearted people with otherwise healthy marriages fail to realize they needed guidance to make it through such turmoil. There's a lot of hope for you, though, as you can already see and sense the danger and you are reaching out for help to deal with the impact on you and your family. So, please keep reaching out until you find the tools and skills to help you successfully navigate through some rough waters.
  25. Shelley Ensz

    This and that.

    Hi Quiltfairy, You are very determined and creative when it comes to all the problem solving that illness imposes. Thank you for sharing your tips as it also helps others who are in a similar boat. Or leash. Disappearing fingerprints are a really fascinating topic...well, at least when it's not your own fingerprints! When I did that page, I also went to the police station to be fingerprinted. It was a hair-brained thing, for sure, but here was my logic: Some doctors don't believe anything a patient says. Just my luck, if my scleroderma fingerprints disappeared, and I told my doctor, they'd likely dismiss it saying, well I bet you just never had any fingerprints in the first place. Whereupon I could proudly whip out my proof! It's a silly thing, but in contemplating it, I realized that fingerprints are a part of my identity. It is another "loss" that scleroderma can sometimes entail. The only upside is that once our fingerprints are entirely gone, we are free to pursue a life of hands-on crimes. (Just kidding! There's still DNA to deal with...not to mention, FATIGUE.) I think most vans can go 300,000 miles nowadays. I had one car that was still perfectly good with over 300,000 miles on it, as upkeep and repairs were always cheaper than a new vehicle. In the Midwest though vehicles can rust out before they run out, due to the salt on the roads (we rinsed that car off very often in the wintertime, and had a garage.) So if the body is still good, it *might* be worthwhile to invest in repairs, if the vehicle is basically sound. One of the popular car services around here (I'm in a large town) has wheelchair-accessible vans (just like a taxi); and we have a city bus service especially for wheelchairs/handicapped that is very cheap. So last year, when I was in a power wheelchair for a few months, I was amazed how well, and cheaply, I was able to get around town without a vehicle (or being able to walk.) I'm mentioning that just for people who are wheelchair-bound in larger towns who may not yet know how to get around. Luckily, I had registered for the handicapped services months before I needed them, because it took several months to get the paperwork processed. (Sorry, this isn't helpful for you, Quiltfairy, living in a small town, which has the flipside perk of things being more convenient.)