Shelley Ensz

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Everything posted by Shelley Ensz

  1. You're welcome, Celia. I just wish it was better news regarding price, availabililty, suitability, and outcome for everyone.
  2. Mike, 77 million?!?! Whooya. Hummer. Okay, Denelle, maybe you should listen more to Mike, than to all my incessant discouraging disclaimers. Too bad he only plays a lawyer on TV, otherwise we could all hire him. B)
  3. Hi Beverly, There's "regular" myositis, dermatomyositis, and polymyositis. Dermatomyositis is the type that includes a very specific type of skin rash. For more detailed info, see: Skeletal Involvement: Myositis (Muscle Inflammation) Janey has dermatomyositis, as well as some other members, and I'm sure they'll eventually pipe in with more responses.
  4. Hi Celia, As I understand it, costs for a stem cell transplant can range from about $100,000 to $250,000. Sometimes there are severe complications, so it can possibly cost more than that. It also requires a lot of time, generally residing near the transplant center for a while before, and after, the procedure. Sometimes people die during stem cell transplants, with widely varying statistics based on the illness, the medical center, the type of stem cell transplant done (there are different kinds), and the overall health of the patient in the first place. Because it is so very costly, and such a severe measure, the ideal candidate is generally someone who has severe rapid-onset diffuse scleroderma, with a very bad prognosis...as well as great medical coverage or substantial financial reserves. They are trying to make the procedure safer, and available to a broader category of patients. In short, it is still being studied and perfected. Dave recently had a stem cell transplant, and we have his blog link around here someplace. He can also chime in with his experience on it!
  5. Hi Celia, I'm very sorry, I didn't mean to be non-understanding or non-caring of your plight! I just wanted you to know that this is often a very frustrating disease for patients and doctors alike. And sometimes not all of the symptoms can be treated, or treated sufficiently, at various stages of the illness. I just didn't want you to give up hope completely, for not having seen the right doctor or having had a very bad encounter with one -- the expert you are trying to see might be the key for you! Unfortunately, plaquenil isn't a sure-fire thing, it only works in some people and even at that, it takes a few months for it to kick in, usually. IVIG isn't always in the ballpark for everyone, since the cost ranges from $8,000 to about $25,000 per dose, and another dose is generally needed about every six weeks. And there are only certain illnesses it is approved for, which vary a lot by company....and by insurance coverage. Even if it is covered, for many people who are on co-pays, the co-pays alone would be astounding. That's not to say there may not be some treatment options for you. It's just to say that it is quite a predicament for both you and your doctors. Nearly all of us have been quite frustrated and upset with the whole process from time to time! So all I really want to say is that I'm sorry for the experience you had, and I really hope things get better for you -- somehow, or another.
  6. Hi Celia, I'm very sorry to hear what you've been through. Unfortunately there are no "natural" cures for scleroderma, and anyone who tells you so, probably has something to sell you! It sounds more like you aren't against the treatments, but against going to the doctor at all. This is an extremely serious disease. So unfortunately, you do not have the option of skipping out on all doctor appointments. Fatigue is often an untreatable symptom. Rest, pacing, and stress management techniques can help. Occasionally some meds help, antidepressants being among the top since depression often accompanies scleroderma. And there is no proven cure for scleroderma, so they might not be doing you all wrong with this approach. Of course, that doesn't make it feel any better! It's awful to come up against the idea that you feel miserable and things are not likely to improve very much...frustrating, to say the least! You may want to consider the idea of hanging in there, and perhaps on the next visit you'll get to see a doctor that you can relate to better. In the meantime, all I can say is, many of us have "been there, done that" and probably sworn off all doctors a dozen times or more. Thing is, we can't afford to do that forever, so usually we end up calming down and going back at it, keeping in mind that it is just as frustrating for the doctors, to not be able to hand us a pill that will cure us, right on the spot...and sometimes not even anything much that will improve us. Many of us end up being put on meds that actually have so many side effects, they make us feel worse! So chin up, a little tiny tad, in that at least they didn't force feed you a pill to make your teeth turn purple and your hair fall out. Not on this visit, at least. :o
  7. But, of course, we are not lawyers and do not take any of this as legal advice. Continue to confer with your lawyer. I've heard that it generally costs about one-third to one-half the cost of a transplant, to hire a lawyer and go to trial. Sometimes that is effective in gaining coverage, but it still leaves you stuck with a whopping legal bill. Which is why it is usually the rich people who get the transplants -- they can afford the lawyers to (try to) make the insurance companies pay for it. It's also possible to end up hiring a lawyer, going to trial, not getting it approved, and still being stuck with the legal bill. So please keep your eyes wide open as you explore the alternatives!
  8. Hi Erin, My husband sees a top expert, who is also a professor, for his lung condition, and he always has an appointment with a resident first. Then the resident consults with the expert, and then they both come in together for the final half of the appointment. And some of the residents he's seen have been absolutely fabulous, and they are on their very best behavior, trying to impress their awesome professor! :) It's possible that might be the arrangement at your scleroderma center. It's worthwhile asking about it, at least. Sometimes they will also give an appointment with a resident to speed up your assimilation into their clinic, rather than have you wait for months on end trying to get to see the "top" doc in their center. Quite often, it is a 3 to 4 month wait to get in for a first visit at a scleroderma center...provided the doctor is still accepting new patients, that is. Good luck on this and let us know what you find out.
  9. Hi Denelle, I'm glad you were accepted for the ASIST trial but sorry to hear you can't get coverage, yet. I think you are taking the smart approach by definitely talking to a lawyer before you do anything at all. You may have some more appeals to pursue first, and they can advise you regarding any employment repercussions. Most employers don't respond well to any sort of public criticism or pressure, and although some people may feel very (understandably!) sympathetic, they probably won't volunteer to pay your rent or your medical bills if you lose your job over it all. So know all your legal rights first! There's not very much protection for people who are ill or disabled, and the options are even more limited when it comes to paying for costly experimental trials. Sorry to say, often it is the rich folks who get the fanciest experimental treatments, or those who have truly outstanding fundraising abilities. The folks at your ASIST center should also be able to advise you regarding financing options, so do keep them apprised of what's happening. I'm sorry it's so rough. My thoughts are with you.
  10. Hi Emmie, Thanks for your "shopping support"! We all appreciate it. I didn't even see the Celebrate plates. Maybe I should go back for another look? Hmmm....
  11. It's last call for Pampered Chef orders! I'm so excited, I can hardly wait to receive my order. We'll be cooking up a storm around here then, with all sorts of new must-have kitchen gadgets. Everyone (in the U.S.) is invited to this online fundraiser to benefit the nonprofit International Scleroderma Network -- you know, the friendly folks who bring you Sclero Forums, and everything. The direct link for Lisa's online Pampered Chef party to benefit scleroderma is: http://www.pamperedchef.biz/christine?page...;showId=1010818 "Batter up!" as they say. You know, cake batter? :blink: If you order something fun (or even useful) to order for your kitchen through this fundraiser, you are welcome to post about it in this thread. Happy shopping! :rolleyes:
  12. Hi Barefut, You can try selecting just the text that you want to print, then in the Printer panel, under "Print Range" check the box for "Selection" . That should print only what you have selected, without the sidebar, and stuff. Does that work for you?
  13. LOL!!
  14. Hi Megan, In my experience, it's normal practice for doctors to give a 3-month prescription, even if you are going on a one-month trial. That way, if the med is helpful you may not need an appointment in order to just get a refill prescription. So, if that's what you were referring to as needing to get a new rheumatologist, you might want to reconsider. I tell ya, we all get thrown for a loop on various things when we are new to all of this, as much of it doesn't seem to make any sense at all. If you haven't yet, I hope you also share with her the warnings regarding prednisone and scleroderma, because MANY rheumatologists are not aware that the reaction to prednisone can be dangerous and life-threatening in scleroderma patients. See: Prednisone and Scleroderma Corticosteroids (such as prednisone) strongly increase the short-term risk of developing scleroderma renal crisis (kidney failure). It also causes a 70 percent increased risk of developing pneumonia. It is crucial to avoid corticosteroids in patients with systemic scleroderma. Some of us have conditions which can only be treated with prednisone, which is another issue entirely. Generally, it is avoidable, and as you see even short-term use can cause severe problems, which can lead to an unnecessarily early demise. With that warning and disclaimer, I'm glad that you are experiencing some relief with it. My husband (who does not have scleroderma) is on a short-term course of high dose prednisone now. He's thrilled with how much better he feels, but he's also braced for the idea that it may be a short-lived wonder. Still, he's enjoying the temporary relief, to the max. If this is all new information to you, and not something you had a chance to discuss with your rheumatologist prior to going on prednisone, then please don't panic and go cold turkey on it. It is extremely important to discuss all the issues with your doctor, first of all, and if you mutually decide to go off of it, it must be done very carefully, as it is not a med that can just be stopped cold. Rather, it needs to be tapered down very slowly in a regimen that your doctor prescribes.
  15. Systemic sclerosis (SSc) is the official medical term for what we commonly call "systemic scleroderma", which can refer to Limited/CREST and to Diffuse forms of systemic sclerosis (SSc). The localized forms of scleroderma, that affect primarily the skin, are called Morphea Scleroderma and Linear Scleroderma, or for short, just Morphea and Linear. Over the years, scleroderma was shortened to "SD" -- among patients, but not really for medical use. The "SD" abbreviation really swept through the ranks with the introduction of the Internet, as we are always seeking easier ways to type things online. So, for a great many years, the words above were the only "real" words flung about in regard to scleroderma. When I wanted to start the "Scleroderma from A to Z" website, I had to really scramble to find an easy domain name. All the good "scleroderma" domains seemed to be taken; and "SD" was too short (and I am sure, probably taken) to be helpful. So I took it upon myself to shorten scleroderma to just "sclero" and thus sclero.org was born. In the process, somewhere along the line, "Sclero" supplanted "SD" as the slang term for ALL types of scleroderma among patients and adherents of our site. Nobody ever intended it, it just sort of happened. It is definitely understood in the online scleroderma patient community -- and even among many of the scleroderma experts, many of whom are the biggest adherents and boosters of our website and nonprofit agency, throughout the world. However, the vast majority of medical professionals hardly know what "systemic sclerosis" is, not to mention "scleroderma" and I've heard more reports than you can imagine of doctors calling systemic types "morphea" and vice versa. I'm not sure that "SD" ever caught on very far in the non-scleroderma medical community, and most patients didn't want their doctors to think they had a South Dakota disease, so they probably used "scleroderma" as their reference term in discussing things with their doctors. Now, the "sclero" slang is so pervasive online, that many people (especially those who are newer to this -- as in the last decade) assume that "sclero" has always been the widespread term for "scleroderma" and that their doctors will thus naturally understand what they mean when they say they have "sclero". But, alas, the doctors are far more likely to look at us cross-eyed, wondering what strange illness we have just invented! So for discussing things among ourselves, any terms work (although far fewer people are likely to even recognize the SD abbreviation anymore) -- but at the doctor's office, be sure to always use the full medical term for exactly the type of scleroderma you have. Then again, some doctors get mad if people with Morphea or Linear only refer to their illness as "scleroderma". They think the patients are trying to be misleading, since they think of "scleroderma" as only referring to the systemic varieties. So those with Morphea and Linear would be well served to NOT give the full name of their illness, but just the first name of it, when dealing with doctors. And since there are so many different types of sclero, varying drastically in their severity, too, it is easy for any of us to assume that everyone else has the same type we do. Or that there is some common treatment that we all share. In reality, it is a very individualized illness and we may all have a different experience as patients. So when swapping symptoms or treatment information, keep in mind that what one person is taking may get very raised eyebrows when we suggest to our doctor that we might need it -- the treatment might be for another type of scleroderma, or constellation of symptoms, entirely. Have you flung about any nicknames for scleroderma outside of the online groups, and had anyone understand it? Or have you felt confused when you were met with befuddlement? If so, now you understand how and why the slang terms have (very inadvertently) changed, over time.
  16. Hi JG, I'm not a doctor, I have no medical training at all (and so forth). But as I understand it, some causes can include lab error (about 20% of all lab reports are erroneous); menstruation; an open genital sore; urethritis; interstitial cystitis; urinary tract infections; medication side effects; and last and least common, various types of kidney disease, including cancer. It's typical to have a follow-up test, and it's typical for that to be fine. Even if your follow-up test shows blood, it is probably something very treatable (like an infection). You can try to mentally write it off as "lab error" until you learn anything otherwise, if that idea helps any.
  17. Sct

    Hi Dave, I'm thrilled that you (finally!) had your stem cell transplant and that you are doing so well. With your positive attitude about the whole adventure, I'll bet by the time you're ready to leave, they'll be begging you to stay -- just for the fun of it. :blink: Good luck getting any rest at all in the hospital. Usually that is nigh impossible. But we're all rooting for you, and delighted for your new lease on life!
  18. Hi RTS, I've had some doctors act strangely too, when all I was doing was simply following their instructions (like for a follow-up visit they requested.) My guess is that sometimes they don't log everything about a visit; they forget they asked us to return; they can't remember why they wanted us to return; they haven't read our chart before we get there; and sometimes there is so much data (other medical records for them to consider) that they become frustrated and then defensive and thus go on the offensive. It's my theory, at least. And there's not much you can do with any doctor who "takes a bad turn" except get out of their office and avoid ever going back to them. As much as some doctors have been great on a first visit for me and haphazard or worse on a second visit (maybe they put less effort into follow-up appointments?) -- I've also had some doctors that I thought were nearly completely worthless on a first visit who have turned out to be fabulous long term. All of us can have bad days, even our doctors. What's hard to figure out is whether that particular doctor always runs hot or cold, whether it was just an exceptionally bad day for them, or whether we said something that set them off, or what? So I hope this helps you realize that most of us have had some unusual medical encounters, and that you are certainly not alone.The best plan of action I can recommend is to avoid that doctor in the future, if you possibly can. If you have to go back to them (like some people who are stuck in limited HMO's or small towns), then make an effort to try to improve the relationship on every visit. And it never hurts to bring along a spouse or friend who is inclined to be helpful -- sorry to say, I've seen astounding changes for the better in some doctors depending on whether or not there is another person in the room. It's enough just to be ill, without having to recuperate from medical encounters. So try to absorb the idea that it's not you; it's the doctor, and attempt to refocus your energies on the ones who are pleasant and helpful, instead.
  19. Barefut, we are going to have to have you be our first official ISN Virtual Exercise Class Instructor. We'll be the first ever to have Exercises by Emoticons. The funny thing is, those exercises actually work! Another one is to say the entire alphabet with very exaggerated mouth movements. That uses every single muscle, and gives gentle stretches every which way. And everyone should aways mention mouth shrinking, or worsening of the shrinking, to their primary doctor, rheumatologist, and hopefully their scleroderma expert, as well. Of course. ;)
  20. Hi Barefut, I hope your strep test turns out okay. I just wanted to reassure you a tiny bit by mentioning that heart murmurs are extremely common in children and in the general population. As I understand it, they say that anywhere from 50 to 100% of children will have a murmur at some time in their childhood. Most heart murmurs are considered to be "innocent" in that they are not part of heart disease. Many of them may even go away or just be intermittent. Of course, though, it's not a good idea to incur the type caused by untreated strep. My mother had that (rheumatic fever) but all it ever caused her was a heart murmur that never needed any treatment. I also have a low-grade systolic murmur. An interesting thing about murmurs is that not all doctors can hear them, especially if they are low grade. So be prepared for the next doctor you see to claim that you don't even have one at all! It's a miracle cure, I tell you...if the next doctor doesn't hear it, therefore it doesn't even exist. :blink:
  21. Hi JG, I'm sorry you have so many things to deal with now. I think the best possible thing you can do is exactly what you are doing -- seeing a specialist! They can advise you regarding treatments that are proven to work, and those that will make no difference at all. The thing is, the sense of desperation is what makes us vulnerable to quacks with useless potions and pills. Often that's not so bad, if we have the money to waste and provided there are no side effects -- but the devastation occurs when we pursue them and end up excluding the real doctors and treatments that may actually help a bit. There are no rapid-fire pie-in-the-sky cures -- and anyone who promises somthing like that is generally not trustworthy. In fact, many of us have some complications that need no treatment at all in various stages of development, other than a watchful eye. Sometimes we want to take something, or anything!, just to relieve the anxiety of worrying over it. Since you are seeing an expert, though, perhaps you can comfort yourself with the idea that you are hiring them to help steer you through the decision-making process regarding *valid* treatments for your condition.
  22. Hi Jennifer, As you may know, my husband Gene is on the lung transplant list. In order to be accepted for it, he needed to have a Nissen fundoplication surgery, which tightens the neck of the stomach and relieves heartburn. In his case, it entirely cured him of heartburn. While they were at it, they also used a portion of his stomach to lengthen his esophagus, because he is over 60, and people over 60 only get to have one lung. This enables him to be eligible for either a right or a left lung at transplant time, thus improving his odds of getting a good match. He is currently (knock on wood) inactive on the list; meaning he is on the list but not actively seeking a lung at this moment. Transplants are now standard (in my understanding) and meds for it should be covered, provided they have medication coverage. If he has ever served in the armed forces, he may be eligible for medication coverage through the V.A. -- but there can be a long wait list (sometimes years) for eligible vets so he should apply for (free) V.A. coverage right away. Anyone who has ever served in the armed forces in any capacity, with an honorable discharge, is probably eligible for V.A. services and V.A. medication coverage (which is $8 per prescription). The V.A. also does lung transplants, at some of the centers. Contrary to popular impressions, lung transplants do not really extend a person's lifespan very much. Rather, they generally improve what is left of it. Many people die during the surgery, from organ rejection, or as a result of being immuno-compromised from the anti-rejection medications. But at least it is an option, and there are some wonderful success stories of people who have fared very well with the transplants, for many years. I hope your friends husband is one of the lucky ones!
  23. Hello Linda (Afii), Welcome to Sclero Forums! Somehow I entirely missed your post earlier. I'm glad that you are staying very active and involved, despite morphea and being on methotrexate. I hope the treatment helps. Keep up the great work in school!
  24. Yeah, Piper...curling hands, that sure might be a clue. Perhaps it's way past time for you to see a scleroderma expert?
  25. Hi Janey, I'm very sorry how your ablation went. Who'd think we'd have to make sure the "mappers" were there before the procedure was done? But now we all know, if any ablating is to be done, the mappers must be there, front and center, before they lift a finger. I'll send you lots and lots of good wishes for "better luck next time." Yipes, it will take courage for you to go round two, won't it?