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Everything posted by jefa

  1. jefa

    Hand Pain

    Hi, Ann and all of you. My hands give me a lot of bother as well. It's hard to find the right words to translate pain to another person. All of the words are so subjective. What might be a zing to one of us may be a twinge or stab to another. I find that if I compensate for one sort of pain by, say, not moving a sore joint, or resting it in a certain way, it may have a knock-on effect to another part of my body. For example, if I sit a certain way to avoid the pain in my hip, my neck will be stiff. I have found that gentle and regular stretching movement does a lot to help. I did a search in the medical part of the site and found a super set of hand exercises that may help: Wrist Exercises
  2. jefa

    Bad Taste In Mouth

    Hi, barefut. I have also had a problem with metallic taste off and on. It was really bad for the short time I took an antidepressant that was prescribed to help me sleep. I couldn't tolerate that effect, so I stopped. The Mayo website says that the most common causes are medications and oral infections and/or hygiene. They suggested regular brushing and tongue scraping.
  3. jefa


    Let me add my welcome, Nanna. Like you, I spent nearly all night reading on this site when I found it (this was on the old forum) and couldn't believe how much information was shared among the members. Good luck with your rheumatology appointment next month and keep us informed of the outcome.
  4. jefa

    New Here

    Welcome to the Forums, Nelly. You have come to the right place as you can see from the great answers you have received so far. Relax as much as you can while you wait for your rheumatology appointment. The first one is apt to be filled with questions, examinations and routine tests, so it is easy to get caught up in it and forget to ask your own questions if you don't have them written down.
  5. jefa

    Atrophoderma Of Pasini And Pierini

    Welcome to the Forums, Phar3ona. Glad you found us. As you can see the members here are very helpful with information. I hope the information is useful to you and that you will keep us posted on your decision for treatment.
  6. Hi, Lori. Glad to see you back and posting. :)
  7. Thanks to all of you for your encouragement. It is good to have such a positive project in which to invest my time and such a wonderful team to do it with. You are a great group.
  8. Heidi, I had no idea how much stuff goes on behind these walls until you started training me. I am so impressed that you have managed to keep things running smoothly AND find time to talk to people and offer support, kindness and genuine friendship. You are one very important reason that the ISN forum support team is so effective. I know I will be able to cope with the technical side of things, because you are a great teacher and mentor. I only hope that some of your spirit will rub off as well. I do hope you enjoy your leave and that you come back posting as a member as often as possible.
  9. Hi, all. I have read about Hughes Syndrome (also known as 'sticky blood syndrome') but I don't have any personal knowledge, though there is some suspician that I may have had a tia at one point. Marilyn, I am glad to see you have joined us and made your first post, though I am sorry to hear about your difficulties. Welcome to the forums. I am sure you will find it a useful place to get information and support from others with the same problems. I do agree with Gizelle and JLF that you should seek treatment, probably with a hematologist. Temporary blindness and dizziness are symptoms I wouldn't mess around with.
  10. jefa

    Newbie From Oz - Gi Tract Surgery

    Welcome, Sharon. As the others have already said, you have found the right spot for information and support. I share similar symptoms, although my doctors don't think my hiatus hernia is bad enough to require surgery at this point. I have been advised the usual behavioural adjustments (raise the head of the bed, don't eat for a couple of hours before lying down, lose weight, etc) but I wonder if surgery won't eventually be needed. Karen, I can see how your stomach would feel smaller as part of it is used as the supporting tissue to give the lower esophageal sphincter (LES) a better fit in the opening of the diaphragm, basically giving it something to resist against. This PubMed article in our files does report good results on the fundoplication procedure with motility issues. I hope both of you keep us posted on your progress.
  11. I presume they mean almost all MALE sclerodermic patients. I wonder if there are other more ways of using thermal imaging as a diagnostic tool?
  12. jefa


    As usual, Mike is here with a thorough explanationn (Thanks, as always). It may be useful to view this graphic representation with everything laid out in columns to see the different test results and what they may mean: Auto-Antibody Patterns To answer your question, Susie, the antibodies don't change into other types, however test results for the various antibodies may be different at various times. Also, your doctor may have included a broader spectrum of tests trying to pin down the results. It is possible for the pattern to change in testing for a single antibody (i.e. speckled to nucleolar).
  13. jefa

    Swollen Tongue

    Welcome to the Forums, Claude. I am glad you found this very informative and supportive group to share your questions with. I am not a medical expert, but it certainly sounds as if some of your systems might be manifestations of scleroderma. Low or negative ANA results do not rule out scleroderma. I would try to see a rheumatologist rather than a dermatologist with your clinical symptoms. As for the tongue growing steadily larger, is it possible that your mouth is growing smaller? Here is a link on mouth involvement in scleroderma which may have some answers for you.
  14. jefa

    First Cyclophosphamide Treatment.

    I am glad Birdman handled his first treatment well and hope that the rest go as well. I am also glad you are keeping us posted for him and that you can find support here, too. Hugs to you.
  15. jefa

    Happy Mother's Day

    Hi, Louise. Yes, mothers are honoured on different days in different countries. In the UK, Mothering Sunday is in March. I have to remember to get a card in March to send to my mother in the states in May. I heard from both of my kids yesterday and talked to my own mom -- in between naps. :)
  16. jefa

    Repeat Blood Testing

    Terrific news, Erin about the 'scary' tests. I am sorry you are having to deal with the inflammatory arthritis, though. I can tell you it's not much fun. You are lucky to be working with a good medical team. Hope they can help you feel better soon.
  17. jefa

    Orange Peel Skin

    Is he recommending that you see a dermatologist? I am not an expert, but a quick search shows a variety of conditions with the symptom of "orange peel" skin. I would want to ask a dermatologist.
  18. jefa

    Anti Th/to

    Greetings, Laura. I see you have been around for some time -- glad you have finally decided to post. Excellent advice on using Google Scholar and I see you have provided quotes around your keyword. This is particularly useful when using words which are less specific that are apt to return a broad result. On the home page of this site, there is a search box which will help you find articles which have already been approved for posting. Others, such as the one Janey linked to, will continue to be added by our hardworking researchers. You can also search in the Forums directly using the Search Forums button above, searching by topic or post. This will return any items that others may have posted within the Forums. In this case, the keywords will be highlighted.
  19. jefa

    I'm New

    Welcome to the Forums, Janice. I am very glad you found us but sorry you may have scleroderma. The initial shock of hearing this news has frightened all of us at some point, but you have come to the right place for information and support. I am actually quite surprised that your rheumatologist is so quick to make a diagnosis without the results of all the tests. Most of them seem to hesitate to commit! Please let us know the results of your tests.
  20. jefa

    Anti Th/to

    Janey's article looks interesting. I did a search onAnti-TH/TO and got three articles, one of which may be the study you referred to in another thread.
  21. Let me add my welcome, azrose. Erin has given you a link that should be useful. If I am not mistaken, one of our other forum members, Piper, has also mentioned a family history with Graves disease.
  22. jefa

    May I Please Vent?

    Patty, I hope your venting helped to clear things a bit and that you aren't suffering too much from your impromptu girls' night. Seriously, Mary has thoughtfully given you some excellent advice. I wish you luck trying to find the right medical team.
  23. Welcome to the Forums, Diana. I am glad you found us and know you will be able to get a lot of answers and support as you already have from Sweet, Janey and Erin. I am sure you will find some relief in Janey's reassurances about your morphea. I don't have morphea, but I have been experiencing the warmth and pain in my little toes. Do let us know what you learn from your tests.
  24. jefa

    My Recent Dr.s Apt

    It is a good idea to check with your doctor first before taking iron supplements as iron can accumulate in the blood and cause problems with the heart and liver.
  25. jefa

    Question About The Voices Books

    I also have an assortment of magnifiers around the house. I have been threatening to get watchmaker's eyepiece. For me, the difficulty with reading is not so much the typeface, but the combination of uncorrectable monocular diplopia (vertical double vision) and the weight of the book itself. I am finding it so much easier to read things on screen than on paper. Have you consider doing an ebook version of the Voices books?