Jump to content
Sclero Forums

Shelley Ensz

Administrators
  • Content count

    3,697
  • Joined

  • Last visited

Everything posted by Shelley Ensz

  1. Shelley Ensz

    Okay, I'm Waaaay Confused

    Hi Erin, I think you are probably going to have some difficulty just forgetting this ever happened, since it sure won't make any of your symptoms go away. Although, to give it its due, Denial is a wonderful state to live in! It has its own place in coping techniques but it is lots easier used by caregivers -- they don't actually feel the symptoms or pain, which is what makes it so real (or sometimes, surreal) for the patients. It sounds to me like there is a conflict in your medical team, and I would feel obliged and inclined to side with your primary care physician unless another rheumatologist weighs in with the same advice as the first one. To get a second opinion, you'd have to go to a larger scleroderma center; probably the one in Ann Arbor, given your location and the scarcity of really large scleroderma centers. If your insurance works for that, etc. Or whatever. Maybe once you are on a treatment program, you could work with the local scleroderma expert. "Wait and see" is very often a valid treatment option for scleroderma, in various stages, but there are many things to weigh in that decision, and your primary care physician must have very good reasons to desire a more aggressive approach than that. In general, I'd naturally tend to side with primary care physician's first, since they see you more often, in different circumstances, that a single visit to a rheumatologist who very probably is not able to comprehend your whole medical history (or even, your whole health history, i.e. they have not seen you in your prime).
  2. Shelley Ensz

    Domperidone (motillium)

    Just in case any new people to this thread have missed previous warnings, we do not recommend or endorse motilium for any use whatsoever. It can be confiscated at the border when trying to import it into the U.S., even if ordered through a pharmacy, since it can cause sudden death and other, much safer, medications are available. Domperidone Warning FDA Alert: Detention without Physical Examination of Domperidone, brands names Motilium, Euciton, Cilroton, Praxis, Seronex, Emiken. Domperidone is not approved for any use in the U.S. There have been several published reports and case studies of cardiac arrhythmias, cardiac arrest and sudden death in patients receiving an intravenous form of domperidone. U.S. Food and Drug Administration (FDA). Domperidone Should Not Be Considered a No-Risk Alternative to Cisapride in the Treatment of Gastrointestinal Motility Disorders. Several cases of QT prolongation and ventricular tachyarrhythmia have been reported with domperidone, a gastrokinetic and antiemetic agent available worldwide but still under investigation in the United States. American Heart Association. Circulation 2000:102:1883.
  3. Shelley Ensz

    Vocal Cord Damage From Reflux?

    The medical term for this is dysphonia (hoarseness, loss of voice). See our section on it in Esophageal Involvement: Dysphonia. And Erin, you're not googling yourself to death, you are simply researching things for the first time that you never had any reason to learn about before. It is too bad that it is such illnesses that makes us research and learn. But at least we have each other!
  4. Shelley Ensz

    Dave Is Really Sick

    Thanks, Mike for letting us know. And thanks, Dave, for clarifying what the situation is. We're still all going to be sending "good thoughts" your way, with hopes that your fevers will settle down and that the healing process will begin.
  5. Shelley Ensz

    Scot Study

    Hi Birdmans Wife, I'm glad he's accepted into the study, at least, if not to the arm that he would have preferred. They are doing it to figure out whether cytoxan is just as good as stem cell transplant or not, so who knows, in the long run its possible that cytoxan might be better. Anyway, of course, do whatever you both feel is best! We have a whole section on lupus on the site. See Systemic Lupus Erythematosus (SLE) We also serve people with scleroderma and related illnesses, of course, but more comprehensive support for lupus could be found on the sites we've linked there.
  6. Shelley Ensz

    Sad News, My Mom Passed Away

    Dear Karen, I'm very sorry to hear you mom passed away. My thoughts and sympathies are with you and your family.
  7. Hi Lisa, We received our order earlier this week. It was all in perfect condition and exactly what we expected. We are having tons of cooking fun with our goodies! Thank you for putting on another wonderful ISN fundraiser, Lisa!!!
  8. Shelley Ensz

    Guess What I Saw!

    And for those who would like to be politically-correct a la scleroderma when also suddenly caught in the media headlights, or even when spotted at the grocery store, garner your Scleroderma Awareness Bracelets Only $2.50 The teal silicone bracelets say "SCLERODERMA" on one side, and "sclero.org" on the other. They are adult size, probably won't fit children, so beware, they are more likely to use them as a slingshot. This FREE commercial brought to you by the friendly folks at the nonprofit International Scleroderma Network (who also bring you Sclero Forums!).
  9. Shelley Ensz

    Washing The Dishes

    Claudia, there is another possible moral to your story -- such as, never do the dishes! ;)
  10. Shelley Ensz

    Dr. Not Listening

    Hi Dana, I'm sorry for the difficulties and confusion you are encountering with your medical care. I hope that it gets sorted out for you soon. There might be some confusion over the various types of scleroderma and their typical symptoms. Are you seeing a scleroderma expert, who could help explain the different types and make sure of your diagnosis and treatment plan? Please keep in mind that I am not a doctor, and that I have no medical training at all. It is my understanding that linear scleroderma does not cause the hands to harden and curl inward, the way that systemic scleroderma does. So, there might be something else going on with your hands, or your diagnosis might be wrong. Usually, doctors are able to easily distinguish between linear scleroderma and systemic scleroderma since the skin involvement is very different. But, sometimes they get it wrong and, very rarely, there are overlaps of one sort or another. About 1/4 of people with linear may experience one or two symptoms outside of strictly skin involvement. But generally speaking ("generally" being the keyword!) the type of lung involvement that occurs with systemic scleroderma is without overt symptoms -- in the beginning stages -- such as shortness of breath severe enough to need an emergency room visit. For that, you may need a consultation with an allergist and/or pulmonologist; it sounds a bit like asthma, since that generally causes more sudden and severe breathing difficulties. Regardless of what is causing the trouble breating, it would be very important to have it properly diagnosed and treated. See: Linear Scleroderma Scleroderma Experts Types of Scleroderma I hope this information is a little helpful, although I suspect it will just add more confusion, right at the moment. Sorry about that! We are glad to have you here.
  11. Shelley Ensz

    Organ/tissue Donation

    Hi JJ Knitter, That's a good question! We have a whole section on the issue of organ donation for scleroderma patients Or, better yet, start at Postmortem Overview which includes organ donation but also covers issues like autopsy. Unpleasant topics, for sure. But all of us face end-of-life issues, either sooner or later (hopefully, a lot later!).
  12. Shelley Ensz

    First Visit With The Specialist!

    Hi Erin, That's an interesting question. It sounds to me like he did right by you. He's not only looking at possible scleroderma but also at any/all other illnesses you may have. It's impossible to diagnose scleroderma until enough telling symptoms develop (like pulmonary fibrosis, tight skin, etc.), and it cannot be done on the basis of antibodies alone. The truly important thing is that he will be following you closely and looking at your entire health, and not exclusively at scleroderma issues. I'd definitely encourage a second opinion if he had flatly said you don't have scleroderma and never would. Or if he had ignored all the symptoms outside of the strictly-scleroderma realm. Or if he had said he wouldn't need to see you again. It sounds more like you are in the early stages of autoimmune disease(s), when the symptoms can be fickle and all over the road for some of us. You may also have multiple autoimmune illnesses, and I know from first-hand experience how confusing that can be, for both the patient and the doctor. In any event, Sjogren's and Dermatomyositis, plus possible Myasthenia Gravis, would be more than enough for anyone to deal with. Although you are surely entitled to a not-scleroderma-for-this-moment happy dance you'd also need some quiet time for reflection on how to adjust to all of your symptoms/illnesses. We cover scleroderma "and related illnesses" which encompass Sjogren's, Dermatomyositis, and Myastenia Gravis, too. See our Autoimmune Diseases page at: http://www.sclero.org/scleroderma/symptoms/ass...ted/a-to-z.html
  13. Shelley Ensz

    Elevated Skin Temperature

    I don't know the answer to this one at all. My skin generally runs cold all over; and my husband's skin temperature is always warm and often very hot. We hold hands a lot -- as an instant "cure" for my attacks of Raynaud's. I've never thought of skin temperature changes or differences as being either good or bad, but rather as a natural variance. But, of course, I have no medical training at all, and I do not know the physiological reasons for variance, or whether it would ever be a symptom that would require a medical consultation. The only exceptions I can think of would be when there is inflammation going on, such as with a pulled muscle, broken bone, skin inflammation, infection, etc., in which case I'd think there would be other symptoms as well. It does seem like it would be more natural for the greatest heat to be near the heart, though, because the body puts a priority on keeping the heart and brain warm, and will not hesitate to spare circulation from the extremeties in order to do that.
  14. Shelley Ensz

    1st Time Here

    Hi Dana, Welcome to Sclero Forums, I am glad you joined us. It is possible to have scleroderma without a positive ANA. It would probably be very important for you to be seen by a scleroderma expert, in order to attain the proper diagnosis and treatment. Most rheumatologists have little or no experience with scleroderma, so the diagnosis is very frequently overlooked.
  15. Shelley Ensz

    Sct And Insurance

    You're welcome, Celia. I just wish it was better news regarding price, availabililty, suitability, and outcome for everyone.
  16. Shelley Ensz

    Sue Them To Get Your Treatment

    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)
  17. Shelley Ensz

    What Is Myositis?

    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.
  18. Shelley Ensz

    Sct And Insurance

    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!
  19. Shelley Ensz

    A Very Disappointing Day

    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.
  20. Shelley Ensz

    A Very Disappointing Day

    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
  21. Shelley Ensz

    Sct And Insurance

    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!
  22. Shelley Ensz

    I'm So Mad! Doctor Switcharoo

    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.
  23. Shelley Ensz

    Sct And Insurance

    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.
  24. 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....
  25. 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:
×