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Posts posted by jefa

  1. Hugs to you, Sara, for coming to the forums to share this with us. It is so good to get an update from someone who has been with her. It is obvious that Lisa is a fighter and I have every confidence she will come out of this a winner. Please keep us posted and let her know how much we are all missing her and keeping her in our thoughts.

  2. Hi, Tru. Just out of curiosity, when was the last time you had a proper test for diabetes (fasting glucose)? Type II often presents later and along with other disorders. Janey's links above are quite informative.

  3. Hi, Christie. Welcome to the ISN Sclero Forums. You have found a terrific place for information and support while you pursue a diagnosis. Of course we are not doctors here and even if we were, would not be able to diagnose you without the appropriate tests and clinical evaluation. I do understand your frustration, however. It would probably be a good idea to find a rheumatologist who specialises in scleroderma. You will find lists for many parts of the world on our Scleroderma Experts page. You may also find our page on Calcinosis useful: Skin Involvement: Calcinosis

  4. In sort of the way you have organised your post, I put all my thoughts down on paper before going to discuss things with the doctor. Then I try to reduce it to an outline with as few words as possible so all the key points are highlighted.


    As you said, this isn't really the place to get the specific answers you are searching for as we are not doctors and even if we were, would not be able to advise anyone without examining them personally. But it is a good place to compare notes with others as long as we realise that what works for one does not necessarily hold true for another.


    I haven't had any experience with the things you describe other than having low blood pressure since my teens as well. I have fainted many times but my blood vessels don't seem to be an issue. I have never required any special needles. I have discussed other conflicting drug issues with my doctor in the past and he says it is all a matter risk/benefit analysis on a case by case business. The trick is for us to keep informed on what those risks and benefits are so we can discuss them intelligently at the time. Especially important if the conflicting treatments are from more than one doctor. Good luck sorting this out.

  5. The problems with chocolate are not limited to reflux. On our Raynaud's Prevention page, you will find this caution:

    Caffeine, cocaine, marijuana, nicotine, novacaine and many herbs and medications restrict blood vessels. So they are a great big no-no for people with Raynaud's!Be on guard for hidden sources of caffeine in tea, soda, chocolate, some aspirins, herbal preparations, and medications.

    Caffeine also worsens
    heartburn/reflux in Scleroderma by relaxing the esophageal sphincter and allowing the stomach contents to flow back up into the esophagus. It's usually easier to quit caffeine gradually (over the course of a week or so) rather than "cold turkey".

    With a minimal amount of research on the web, you will find that chocolate also contains theobromine (the component that makes us feel better when we eat chocolate and which also makes some people and pets quite ill) and polyphenols (antioxidants) which have other healthful benefits to our cardiovascular system. The health benefits are really only attributed to dark chocolate (more than 70% cocoa solids) and then only 1 or 2 squares per day.

    White chocolate is nothing but milk solids, cocoa butter and sugar - no health benefits and lots of calories. But it does not contain theobromine or caffeine, so it shouldn't be a problem for reflux or Raynaud's.

    The range of colours between white and dark chocolate is determined by the amount of cocoa solids, with the amounts of theobromine, pholyphenols and caffeine increasing as the chocolate gets darker.


  6. I have had the same problem, Christy. I discovered, however, that my holes hadn't completely closed and I had a pair of very thin wires that I could insert. I have been wearing them now and then and cooling the warmth that arises with a bit of antiseptic solution. I hope to keep progressing to slightly bigger ones. My husband has been annoyed that I haven't been wearing earrings because it was an easy gift for him to buy! Now he has trouble thinking of little things.

  7. Hi, Lucy. I haven't added anything to these Gleevec threads but I have been reading. Just wanted to jump in and say how nice it is to see a picture of you.! Love your little friend.

  8. Hi, Razz. So nice to meet you - wish it could have been under different circumstances. I am glad you finally decided to start posting and I look forward to getting to know you better. Please let us know if you have any questions or particular concerns.

  9. Hi, Georgette. Good question.


    I am not a doctor, though I have studied anatomy and physiology in the distant past. The immune system is complex and includes

    • Thymus
    • Spleen
    • Lymph system
    • Bone marrow
    • White blood cells
    • Antibodies
    • Complement system
    • Hormones

    The best description I have found is in this article from the site

    HowStuffWorks, How Your Immune System Works. It is several pages long but quite interesting and informative.


    As for your question, yes I sometimes experience what you describe when I go out. I believe it is the fatigue element at work. I feel nausea, malaise and fatigue with any unusual exertion. I also seem to cough more when I am out and about and carry water and sweets to suck on in my bag.

  10. We seem to have quite a few new members joining recently. I try to welcome each of you individually, but in case I have missed someone, please know that we are here for all of you and hope to eventually get the chance to say hello or give a hug.


    This is the main Sclero Forum in which we focus on issues relating to scleroderma and related matters. In addition we have the Sclero Den and its subforums, Sclero Kitchen, Sclero Chat (with news about our live chat feature with schedules), and Getting to Know You. These were created to allow us to speak more casually in a social setting. Visiting these forums will allow you to share important family news, talk about recreation, share recipes and generally get to know each other better. Occasionally you may see a thread being moved into a forum where it is likely to get the right responses.


    Our team of support specialists are volunteering from different time zones, so please be patient if your message doesn't show up right away. Please also take the time to read the Forum Guidelines which are linked at the top of every page. As it says in the guidelines, we are a wonderful resource for general support and information for people who are interested in scleroderma or related illnesses. Post to the list as often as you like, especially if it is to lend kindness or comfort to others.

  11. Welcome to the Forums Nina. I see you are getting involved right away and that's the best way to get into what the forum is all about - sharing information and support. We all have our bad days and shouldn't feel guilty about the occasional rant or frustration. Diagnosing this disease is not easy, especially for doctors who are not familiar with the specifics which is why we recommend seeing a scleroderma specialist or at the very least a good rheumatologist who, along with your general care physician and an educated and aware YOU, can possibly pinpoint a diagnosis, but will most importantly deal with the individual symptoms as they arise.

    I look forward to getting to know you better.

  12. Hi, Sharon.


    Nice to hear from you again. Sorry to hear about your mouth problems. It is frustrating trying to cope with all these changes, but we are here for you when it gets you down. On our page of Worldwide Scleroderma Specialists you will find a link to the Scleroderma Clinic in New South Wales. I hope this is some help to you. Hopefully some of your neighbours will jump in and offer you some suggestions for a good rheumatologist.

  13. Hi, KarenL.

    You might want to discuss these articles on Quinine warnings with your doctor (from our Supplements and Scleroderma: Herbs, Vitamins and Over-the-Counter Remedies page):

    Definition of Quinine. Quinine has been used outside of malaria as a remedy for fever and pain and to treat and prevent leg cramps. Prolonged administration of quinine may produce toxic symptoms such as deafness, disturbances in vision, skin rashes, and digestive upsets. MedicineNet.com

    FDA: Don't Use Quinine for Leg Cramps. FDA Cracks Down on Unapproved Quinine Drugs, Cites Problems Including Deaths. WebMD Medical News. 12/12/06.

    Acute pulmonary edema caused by quinine. A 57-year-old man who had been intermittently taking one 300-mg tablet of quinine sulfate orally for leg cramps experienced transient acute pulmonary edema and hypotension 30-40 minutes after ingestion on two consecutive occasions. PubMed. Pharmacotherapy. 2004 Sep;24(9):1221-4.

    Quinine associated blindness. Visual loss has been associated with quinine serum concentrations above 10 microg/mL (therapeutic range 2-5 microg/mL). Other adverse reactions include neurological symptoms, haemolysis, acute renal failure and arrhythmia. PubMed. Aust Fam Physician. 2004 Aug;33(8):627-8.

    Severe adverse effects of quinine: Report of seven cases. Quinine is a drug which is mainly used for prevention of nocturnal leg cramps. Serious side effects of this drug have been described in recent years, including cytopenias and the hemolytic-uremic syndrome. PubMed. Department of Renal Medicine. 2002 Oct;88(10):717-722.

  14. Hello, Kumarb. Welcome to the ISN Sclero Forums. You have found an excellent place for discussion and support. I am sorry to hear your son is having these difficulties. How old is he, by the way?

    We are not doctors, so it is impossible for us to give you any advice or suggest possible diagnoses based on information from particular tests. I would ask whether your son is being seen by a rheumatologist. A scleroderma specialist would be the best choice, but a rheumatologist would be the next best choice.

    Our page on Scleroderma Experts will give you links for most parts of the world.

    Our page on Autoantibodies in Scleroderma will give you some information about some of the tests. Positives and negatives in some of these tests do not necessarily rule out (or rule in) a specific diagnosis.

    I hope after reading a bit more about some of these tests you may be able to ask your son's doctors to explain things more thoroughly. Again, welcome. I look forward to reading more of your posts.

  15. Welcome to the ISN Forums, smurfette. I look forward to getting to know you better. I am sorry to hear about your problems with gastroparesis (all one word). Here is a link to an article from MayoClinic.com on Gastroparesis (the Treatment section).


    Under Emerging therapies it says:


    Botulinum toxin (Botox). Once used exclusively to treat migraines and wrinkles, botulinum toxin is now being tried for a variety of problems, including gastroparesis. In trials, researchers have found that Botox relaxes the pyloric muscle in some people, thereby allowing the stomach to release more food. The benefits are temporary, however, and more studies are needed to determine the overall usefulness of this treatment.

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