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Shelley Ensz

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Everything posted by Shelley Ensz

  1. Shelley Ensz

    Informing People About Sd.

    Hi Mary, That is wonderful that you were able to be of such a help to your aunt her niece! It sounds like you really helped to get them on the right track with scleroderma. I hope she joins the forum, too. Or at least gets some more (and more current!) information to work with.
  2. Shelley Ensz

    I'm New

    Hi Milica, Welcome to Sclero Forums! We're delighted to have you join us, and look forward to hearing more from you.
  3. Shelley Ensz

    Anyone With Interstitial Cystitis

    Hi Bunky, I also have interstitial cystitis for over 30 years, underdiagnosed and misdiagnosed for the first few decades. But, I have Multiple Autoimmune Syndrome (MAS) and not "only" scleroderma. I tried many meds and diets that were of very little help. I've had bladder distention surgery with biopsy and fulgeration of widespread petechial hemorrhages and a Hunner's ulcer. That put me out of my misery for about a year. Then I began DMSO instillations, which have been terrific for me, although after my recent cystoscopy, they say I need to have another distention surgery since the widespread inflammation and shrinkage has set in again. We have a page on our main site about Interstitial Cystitis and its relation to other autoimmune diseases, too, along with a patient story collection that you may find interesting. Beware that many doctors and even rheumatologists may have no idea what Interstitial Cystitis is, and may think that it is simply "regular" cystitis...even otherwise very astute doctors may know very little of rare bladder diseases, which is often what prevents or delays diagnosis of this exceedingly painful inflammatory bladder disease for many years.
  4. Shelley Ensz

    Payment For Clinical Trials

    Hi Denelle, That's a good question. It's my impression that the patient is usually responsible for paying for the more expensive clinical trials like this, and that occasionally the patient's insurance will cover it. You can inquire directly with the study coordinator: Scleroderma: Cyclophosphamide or Transplantation? If you have additional questions about participating in the SCOT study, please contact us at 1-866-909-SCOT or [email protected]trial.org. When you find out, will you post the info here? Thanks!
  5. Shelley Ensz

    Disability Allowance ( Got It Yes)

    Congratulations, Lyndylou! I'm going to place my sclero bet that the trainee doctor will not be able to properly diagnose you. But I sure hope I'm wrong!
  6. Shelley Ensz

    Should I Worry

    Hi Nightfrog, I'm not a doctor and I have no medical training at all, but I'd definitely say you need to see a doctor over a 50 pound unexplained weight loss in 4 months. There are hundreds of things that can cause this, ranging widely from anxiety to malabsorption, even some very common things like diabetes. My son experienced a dramatic unplanned weight loss. He was head over heels delighted with it, thinking he was finally being blessed with exuberant good health. Then he ended up with a sudden, severe diabetic crisis. He was very fortunate to eventually emerge from ICU alive. He really wishes he had gone to a doctor sooner, it could have prevented that truly near-death experience. Every community has some resources or free clinics or ER's for people who are uninsured. Please find out what is available in your area, and see a doctor before you wind up in the emergency room. Also, start with a regular doctor, preferably an internist. It can takes months to get in to see a rheumatologist, and they would want to know that all the usual and more common things have been ruled out first, so going straight there might be a waste of time (and much more expensive, and harder to arrange in uninsured situations, too.)
  7. Shelley Ensz


    Hi Kathygirl, I've also found from the School of Hard Knocks that it is very important to know a doctor's background and interests before booking an appointment with them. It's easy enough to ask for their bio when calling for an appointment. Heed all warning signs and do NOT assume that on top of their special interests they can also act like a normal doctor, particularly in areas like dermatology. One of my dermatologists seemed very perplexed with my case but it wasn't until the fourth visit and second biopsy that she told me that she specialized in skin cancer and she'd never seen anything like this (skin tightening) in her life, and then referred me to another clinic. In the meantime, she'd had me going around in circles, saying I probably had eosinophilic fasciitis or morphea or panniculitis. She was very kind and helpful in other ways, but if I had only inquired about her background ahead of time, then I would have known this was not her forte. Some doctors really get firmly in the headset that they are only their specialty AND their special interests, and tune out everything that doesn't fall into their narrow little slice of the world. And that includes us, the unwary patients who expect them to be a "real" doctor -- you know, like with knowledge of all sorts of illnesses and stuff, and not just waiting in line for a face lift or mole removal (dermatology) or a laser eye treatment (opthalmology). Even some sleep clinics can be geared only towards sleep apnea, and tune out any other sleep disorders. Some (actually most) urologists only specialize in males and aren't even aware of the diseases (like interstitial cystitis) that primarily affect women. Some rheumatologists focus only on a certain disease, such as lupus or rheumatoid arthritis. If you aren't aware of the doctor's background, but in the summary, they come in and say, good news, you don't need a facelift (say what, I wanted to know what's causing this skin tightness!), or laser correction would cost $2,000 (say what, I needed a prescription for dry eyes!), or good news, you don't have a single symptom of rheumatoid arthritis (say what, I was referred to you for scleroderma symptoms!)...then you know you've fallen victim to the only-my-special-interests doctor. Also, some doctors may specialize in an illness you have, but may not "believe" in or offer all of the available treatments for it. So if you are interested in a specific treatment, make sure that is an option with that doctor or clinic. After all, if we bark up the wrong tree, we can expect to have nuts fall on our head. And you can quote me on that! :o
  8. Shelley Ensz

    Can No Longer Cope With Bowel Troubles.

    Hi Deb, I'm sorry to hear what you are going through and that gallbladder surgery didn't fix it. Have you had thorough testing for Celiac Disease, yet?
  9. Shelley Ensz

    My Visit With Rheumatologist Yesterday

    Hi Jessica, Yes, it is extremely important to get as much aerobic and upper body strength building exercise as possible (for some people it is not possible to do much at all) with most lung diseases. However, it needs to be done within limits and with testing to make sure the effect on oxygen saturation levels is acceptable. That is why pulmonary rehabilitation is usually recommended for lung patients; it teaches how to best live with and make the best of things. My husband has severe asthma and COPD, on 5 liters of oxygen all the time, and he tries to do at least a 20-minute walk or more every day, plus a sit-and-be-fit class for upper body strength twice a week. And, he stays as active as possible, even working as a part-time restaurant greeter. However, he does all that under the advice of his pulmonary doctor, after having had pulmonary rehabilitation, with an oximeter, etc. It can worsen things to just take off exercising without proper instruction, saturation monitoring, and training in how to handle shortness of breath situations, etc.
  10. Shelley Ensz

    Saw The Dr. To Review My Results.

    Hi Jessica, I'm sorry to hear what you are going through. Sometimes joint pain is the first sign of scleroderma, but the kicker is that scleroderma cannot be diagnosed based only on joint pain and positive bloodwork. It requires a certain constellation of symptoms, at which point they then seem to take the bloodwork more seriously. See What is Scleroderma? Apparently, a fair number of people develop just one or two symptoms of connective tissue disease, and even with positive antibodies, the illness stabilizes or goes away without developing into full-blown disease. A second opinion sounds like a good idea, though, since it doesn't sound like you were thoroughly screened for other symptoms of scleroderma which can develop silently (like lung involvement.) I'm not a doctor (I have no medical training at all) but to me, plaquenil sounds like a good step in the right direction, and it is often quite helpful with joint pain. It is considered to be a DMARD (disease modifying anti-rheumatic drug).
  11. Shelley Ensz

    Saw Rheumy/dermatologist...kinda Scared

    Hi Shari, I'm very sorry to hear what you are going through, both for illness and for diagnosis. I know firsthand how very confusing that can be. I was UCTD (Undifferentiated Connective Tissue Disease) for a long time, and I also had great trouble believing it was a "real" diagnosis and I've heard many people who are diagnosed with UCTD still refer to themselves as being undiagnosed. To make matters worse, I've heard some doctors refer to it as a "garbage can diagnosis"! Well, if they don't always take it seriously, how can they expect us to? But it really IS a diagnosis, even if it is too blurry for most of us to live comfortably with. And, in a sense, some of us were/are really undiagnosed (or misdiagnosed) with UCTD because you can just tell that it sounds like their doctor has missed the mark, many of them having more symptoms (and some quite specific symptoms) than others who were readily diagnosed with more specific ailments, such as scleroderma, Sjogren's, lupus, etc. Likely, at every doctor visit they drop another name of something else you might have, as the symptoms wax and wane. It's nice to get an indication which direction things are headed, but then again, if they could only be more specific, and definite, then you'd know what to expect and could deal with it better. My goodness, what got into me? I just want you to know, many of us around here certainly understand what a very long and difficult diagnosis is like, and you are not alone. And somehow, you'll make it through this time. We're here for you.
  12. Shelley Ensz

    Isosorbide Dinitrate (isordil)

    Hi Jenny, Welcome to Sclero Forums, it's delightful to have you here. I'm sure you'll hear from others who have telangiectasias. In the meantime here is an interesting link about them on our main site: Telangiectasia
  13. Shelley Ensz

    Okay, I'm Waaaay Confused

    Hi Erin, You'd really have to call the center and see what the wait is. It is usually several months or longer to get in for a first visit at a scleroderma center, but that can vary an awful lot. There are several female doctors at the Ann Arbor scleroderma center, so you'd have a good choice -- University of Michigan Dept of Internal Med/Rheum 3918 Taubman Center, Box 0358 1500 E Medical Center Dr Ann Arbor, MI 48109-0358 Anyway, hope that helps a little bit. Whatever you do, keep your primary care physician! She sounds like a real gem. Warm Hugs, Shelley
  14. 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).
  15. 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.
  16. 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!
  17. 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.
  18. 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.
  19. 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.
  20. 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!!!
  21. 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!).
  22. Shelley Ensz

    Washing The Dishes

    Claudia, there is another possible moral to your story -- such as, never do the dishes! ;)
  23. 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.
  24. 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!).
  25. 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