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Everything posted by jefa

  1. jefa

    Lymph nodes in chest

    Welcome to the ISN Sclero Forums. I am sorry to hear about your difficulties, but you are on the right track working with the doctors to find the cause. As Judy mentioned, not everything that hits us is scleroderma related. It is sometimes comforting or encouraging to find out that what you may experience is shared by others, but there is always a danger that you will ignore something because it seems to be shared with others in the same boat and miss getting it taken care of.
  2. jefa

    Foot Problems

    I am not a doctor, but there is quite a bit of podiatry information online. Loss of the fat pad under the ball of the foot is actually quite a common problem in the general public and is worsened with age and particularly in women. As Celia indicates, it is important to provide some kind of cushioning, make sure you have shoes that fit well and socks that are not to loose (will move around inside the shoe) or too tight, causing the same problems as tight shoes. Gel inserts are good. I have also found that sheepskin lining helps with the overall cushion effect, not to mention keeping the Raynaud's toes at bay with their toasty warmth.
  3. jefa

    Hello, Newbie on board

    Hello, John, and welcome to the ISN Sclero Forums. I am so sorry that you had to go through such a dramatic initiation to this 'club' as you put it. It is unfortunate that you had to lose a finger, given your profession and I hope you don't have to lose any more. It seems that you do have a positive attitude about it all which is a very important part of being able to cope. I see you have already been reading and posting in other threads. I look forward to getting to know you better. If you have any specific questions, please let us know. In the meantime, feel free to explore the Medical Pages which hold a wealth of information.
  4. Hi, Tabitha. I'd like to welcome you (and your sister) to the ISN Sclero Forums. I understand your frustration with a diagnosis which seems a bit unclear, especially when everything you read opens up new and scary things to worry about. I am not a doctor, but it sounds like there is a bit of a conflict in the name 'progressive' systemic sclerosis for a condition which is not 'active'. The terminology these days is usually just systemic sclerosis. CREST is a syndrome which is often referred to separately but can also be another way of indicating Limited Systemic Sclerosis. Are your sister's ulcers on her toes? Digital Ulcers are usually caused by Raynaud'sinvolvement, even if you don't see the blue color. Has she seen a rheumatologist or a scleroderma specialist? If not, this should be the first course of action as prevention of ulcers is much easier than treatment. Meanwhile, both of you should relax a bit and concentrate on getting the appropriate treatment. Feel free to ask any questions which come up.
  5. jefa

    Need Input!

    Hello, Whitney and welcome to the ISN Sclero Forums. I am so sorry to hear about the diagnosis which brought you here, but at least you have found a great group for information and support. I don't have morphea but we have several other members who do. For a start, here is our medical page on Morphea: What is Morphea?
  6. jefa

    Still waiting ...

    Hi, Judy. I noticed that you are having trouble with your prescribed daily aspirin dose. You should be able to get the lose dose aspirin in an enteric coated form which does not dissolve until it gets to your intestines - this should help with any reflux issues. For it to be effective, it should be taken daily. Talk to your doctor about this.
  7. jefa

    Newly Diagnosed

    Hello, Sarah, and a warm welcome to the ISN Sclero Forums. I am sorry to hear about your recent diagnosis, but I am sure that you will soon find you have come to the right place for top quality information and support. Here are a couple of links to get you started. Systemic Sclerosis: Diffuse Scleroderma Emotional Adjustment and Scleroderma Try not to get too overwhelmed with it all. There are many forum members in similar situations who live full, busy lives. Please feel free to ask any questions that arise and join in posting on any of the threads that interest you.
  8. This is an excellent article.
  9. jefa

    Localized Scleroderma questions

    Welcome to the ISN Sclero Forums, Loyhargil (are you a Dr Who fan?) Sounds like you have been dealing with this for some time now. I don't have any personal experience with localized scleroderma, but we have several forum members with morphea and linear scleroderma, though not necessarily both. Hopefully some of them will come forward. You may have already read the information our main site, but I include the links to both pages so you can have a look at the sections on patient and caregiver stories for each to get an idea of what others may have experienced. Localized Scleroderma: Linear What is Morphea? Meantime, I hope you get a referral right away for the rheumatologist and that some help will soon be forthcoming.
  10. jefa

    Hurrah for Sclero.org!

    Yes, it is a great place for information and I found it the same way, JJ. Well, not the same symptom, but the same path. Each day when I read all the new posts and see how much help people have received from the wealth of quality information and unparalleled support of the members, I am glad to be in a position to contribute whatever I can to keep it going. There are links in the right column for those who wish to make financial contributions and also for those who think they have something to add as a volunteer. And each of us can also continue to support each other by sharing your own experiences with others who come here in need of help.
  11. jefa


    From my experience working with her, I have a feeling she has a pretty good idea of the importance of her contribution. I found her presence and hard work inspiring and I still miss her, too.
  12. jefa

    What do you do to control joint pain?

    Nina is onto the right track when she suggests that exercise with music can be a good way to help the pain. Apart from the actual benefit from the exercise, the music can be uplift your spirit and improve mood, both of which go a long way towards fighting fatigue according to this article found on our Emotional Adjustment and Scleroderma page under the Management and Pain section: Listening To Music Can Reduce Chronic Pain And Depression By Up To A Quarter. Listening to music can reduce chronic pain by up to 21 per cent and depression by up to 25 per cent, according to a paper in the latest UK-based Journal of Advanced Nursing. It can also make people feel more in control of their pain and less disabled by their condition. Medical News Today. 05/25/06. It is important to remember to check with your doctor before starting any new exercise program and to remember to do warmup and cooldown routines before and after each session.
  13. Yes, Shelley is right. In fact, Sara had started a new thread a while back and some people kept posting to the old one asking how peanut was, so I merged them.
  14. jefa

    Board Games!

    Scrabble has always been my favourite. I also used to like one called Feudal which was like a cross between chess and Stratego. It was one of a series called Bookshelf Games.
  15. jefa

    A Summer Farewell

    For a moment I thought I had wandered into the personals ads. :D
  16. jefa


    Welcome, Juanis. Here is our link on Emotional Adjustment and Scleroderma which Razz referred to. This page has much information for those just coming to grips with Scleroderma and also for those for whom it is a long time acquaintance. I look forward to getting to know you better.
  17. jefa

    Update on Tests

    Hi, Judy. Great news. Janey's link was broken, but it has been fixed now. Please have a look again as there are loads of articles on the subject.
  18. Hi, Celia. Apparently Creon Forte is a replacement pancreatic enzyme, one form of the drug Pancrelipase. I have no experience with the drug, but I thought you might find this link of interest.
  19. jefa

    Prognoses with CREST?

    Hello, rainbow. I am glad to see you are getting so many responses. Here is our page called What is CREST Syndrome? which should answer many of your questions.
  20. jefa

    Treatment Options

    Hello, Shennen Welcome to the ISN Sclero Forums. I am glad you have found us and hope we can offer some support. Perhaps you'd like to tell us a little more about yourself. Have you been diagnosed with scleroderma, and if so which type, etc. Without knowing a little more we can't be of much help. We are not doctors here, but we can, like Judy, point you in the right direction and share our own related experience. The page Judy refers you to is on completed Clinical Trials with positive results. This includes one article on photopherisis and others on PUVA/UVA-1 and Phototherapy.
  21. Hi, Shari I know you must be frustrated, but to be honest, it sounds like you are getting reasonable treatment. It is hard to have to replace a doctor that you liked -- often no one seems to measure up. I am not a doctor and cannot give you specific medical advice, but Plaquenil is a typical treatment and often works very well as a first line DMARD (disease modifying anti-rheumatic agent) which is far less toxic than methotrexate. It is often prescribed as a diagnostic tool in difficult to diagnose rheumatic diseases. Diagnostic in that if it works, there must be something there. If it doesn't, they can look elsewhere or move on to something stronger. When you do not have many clinical symptoms, it is still important to keep on top of kidney and liver function. You are already following up on cardio, pulmonary and gastric issues. 3 to 4 months is not a long time to wait between appointments. I am sure you will eventually find a doctor who you feel comfortable with. Several people here have paid out of pocket for a scleroderma specialist -- only you can decide whether that is something you can afford. I don't know what you mean by PA; not familiar with that abbreviation. I do suggest you try to relax a bit and realise that these things may not resolve themselves overnight. In the meantime, you may appreciate reading our page on Difficult Diagnosis.
  22. jefa

    I am worried - please help me!

    Hi, Rainbow, and welcome to the ISN Sclero Forums. You will find many of us have become freaked out at some point by what we read on the internet. I believe there are other forum members who have tested positive for anti-centromere antibodies who have never developed any symptoms. In this MedicineNet article on Antinuclear Antibodies is the following information: ANAs can be found in approximately 5% of the normal population, usually in low titers (low levels). These people usually have no disease. Titers of lower than 1:80 are less likely to be significant. (ANA titers of less than or equal to 1:40 are considered negative.) Even higher titers are often insignificant in patients over 60 years of age. Ultimately, the ANA result must be interpreted in the specific context of an individual patient's symptoms and other test results. It may or may not be significant in a given individual. I am not a doctor, but in your circumstances I would try not to worry unnecessarily. Anti-centromere antibodies can also be present with Sjogren's or Autoimmune Overlap Syndrome. Continue to follow up with your doctor's on symptoms which may arise, but live your life and enjoy your young son. Try not to stress yourself too much anticipating what 'might happen' someday. In the meantime, please look around. You will find us all very open and willing to share experiences.
  23. jefa

    Social Security

    Hi, Shari You have received a lot of good advice. One very important thing to remember is that even when two applicants have seemingly identical circumstances, the application experience may be completely different. Shelley is right in saying the best place to get specific information is the source, the Social Security Administration website (the link Janey gave you above). On the site you will find a page called Adult Disability Starter Kit and in particular a link to the text version of the Fact Sheet which is very informative. On this sheet they give the following: How does Social Security decide if I am disabled? By law, Social Security has a very strict definition of disability. To be found disabled: You must be unable to do any substantial work because of your medical condition(s); and Your medical condition(s) must have lasted, or be expected to last, at least 1 year, or be expected to result in your death. Depending on the office in which you file, the individual claims representative who has your case and the completeness of the medical information supplied by you and your doctors, you may find everything falls into place, but it is far more likely that it will be a difficult process and make take as long as three years to get a favorable ruling. While you are boning up on all the information needed to make a decision which is right for you, make sure you have personal copies of as much information as you can gather. Good luck.
  24. jefa

    Need advice

    It is unusual for an eight year old to be suffering from reflux. If she is symptomatic, you should make an appointment for her to see a doctor and let him or her decide whether further tests are warranted. You would feel a lot worse if you missed the opportunity to get treatment because of your fears.
  25. jefa

    Terrible Leg and Hip Pain

    I have a 'calendar' window which opens onto a wooded area. I leave the curtains even when it is cold as the changing views are so striking. Now, if I could just get somebody to wash it for me... :D