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jefa

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Posts posted by jefa


  1. I have no experience with bunion pain, I used to use lambs wool (you can get it in the footcare selection of bigger drug stores) to cushion tender spots on my feet. As for the D supplement, it's not like it is going to give you side effects like other drugs. You really should be taking it if your doctor advises it. My rheumatologist has me taking a calcium supplement with D included.


  2. No bottom button I am afraid, but from the topic list you can go into a thread from the 'last post' link on the right hand side, just before the name of the person who made the post. This should cut down on your navigation. This is great for multi-page threads as well as it goes straight to the last post of the last page.


  3. Fatigue is the single most difficult symptom for me to cope with and some days I really do find it difficult. As Sheryl said, the symptoms you describe do sound a bit like depression. It wouldn't be a bad idea to talk to your doctor about this. My own doctor recently increased my SSRI (fluoxetene) to see if it will help. Plaquenil is supposed to help with the fatigue, but it apparently can take up to six months before it makes a difference. I am still counting.

     

    Our page on Scleroderma Fatigue may have some useful tips for those of us who suffer from fatigue:

     

    Mild to extreme fatigue is a common symptom of scleroderma. It affects your daily activities and overall quality of life. Fatigue is not in your head. It is caused by physiological problems as well as psychological problems associated with the disease or other symptoms of the disease.


  4. I have just been reading all of your very interesting questions and answers. I am not a doctor and everything I know about morphea is from reading here on the site, but I do have a few comments. For one thing, it seems that in terms of diagnosis, biopsy is the definitive way to get the answer. Nae is correct in saying that the SCL -70 antibody is usually indicative of systemic sclerosis, but having it does not mean you will develop it. Also you can have a negative ANA and still have systemic sclerosis (or morphea).

    Here is our page on Localized Scleroderma: Morphea and our page on

    Auto Antibodies in Scleroderma.


  5. This is an interesting discussion. I also went to a nutritionist (for my parents to offer moral support). We ended up taking two of her courses at a local university and my daughter also attended the second one. Our eyes were all opened and it was extremely beneficial to each of us for different reasons.

     

    Please remember that as David and others have said, the advice given to him was based on his personal situation. While it is interesting to compare notes, there are potential dangers in making dietary changes based on someone else's experiences. This came home to the four of us (my mom, dad, daughter and I) as we were each given different advice, all based on the same basic nutritional guidelines, but geared for our particular circumstances at the time.

     

    Here is our page on Scleroderma and Diet for your reference.


  6. I feel for you, having had similar discussions with various rheumatologists, but in answer to your question, we are NOT experts here and are in no position to give you a diagnosis based on a picture. The clinical evidence, in other words what he sees while examining the appearance of your skin first hand, is worth more to him in terms of diagnosis than a picture. Keep in mind that tightness can be from swelling rather than skin fibrosis.

     

    Yes, it would be nice if they would talk to us in the way you describe in your point number 3. We can always dream, can't we? I have given up trying to present a diagnosis to my doctors. Instead, I discuss symptoms only and try to work with them to come up with an appropriate treatment plan. As long as you do your research, you can question them intelligently as you did regarding the fibromyalgia. Are you being treated for all of your symptoms?

     

    If you are not happy with his opinion, perhaps you should find another rheumatologist, preferably with experience in scleroderma.


  7. Yes, I have had to battle with sorting out a topsy-turvy schedule in the course of sorting out my various symptoms. It is a cycle which tends to perpetuate itself if you don't change lifestyle to break it. I am not a doctor, but since you have mentioned reflux in several posts, it seems that this is the place to start. For me, it took a number of changes, including modifying what and when I eat and sleeping with the head of my bed elevated to prevent the actual flow of stomach contents. Also sleeping on your left side takes advantage the anatomical design of the stomach to reduce the possibility of reflux. On our Diet and Scleroderma page there is a list of foods which can trigger reflux:

    For relief of systemic scleroderma symptoms such as Raynaud's and heartburn, you may want to particularly avoid:

    • Caffeine (can trigger Raynaud's and Heartburn)
    • Chocolate (can trigger Raynaud's and Heartburn)
    • Peppermint (can trigger Heartburn)
    • Ginger (can trigger Heartburn)

    I note from your signature that you are a fan of chocolate. While chocolate does claim some health benefits, it also contains alkaloids which have the dual effect of relaxing the lower esophageal sphincter (LES) and increasing the amount of acid the stomach produces. I have eliminated all sources of caffeine, chocolate and peppermint (I wasn't eating ginger). I also found that excessive alcohol in the evening interferes with sleep and I try not to eat anything in the three hours before bedtime.

    The last thing I discovered to have effected my sleep patterns is the time of day I was taking some of my medication. I was taking my SSRI (fluoxetine) in the evening with my dinner. I eventually learned that it was an alertive rather than somnolent antidepressant and should be taken in the morning, allowing you to be alert during waking hours and to rest better at night.


  8. As far as I know it has always been there, Tru. Using that button takes you straight to a reply without showing the other posts on the thread. I personally find the other comments useful in getting the overall context before replying, so I don't ever use it.


  9. Hi, Donna. I just wanted to let you know that these threads are not part of the chat program. If you see a thread with something that interests you, such as this one, then just add your reply to the thread. Each time a new answer is added, the thread will come back up to the top of the page for others to read. I have merged this with the original thread.

     

     

     

    As for chat, we currently have chat at two different times, so you may find there is one which you can join if you are interested. Here is the Chat Schedule.


  10. Hi, Smurfette. This link has recently been added to our Researching the Internet page:

    All-Acronyms.com. Includes medical acronyms to help make sense of medical records and prescriptions.

    Another page which has a lot of abbreviations explained is our What are Antibodies? page which explains a lot about the various tests and what the results might mean. As Celia says, if there is something specific, please ask.


  11. Hello, Nae. Welcome to the ISN Sclero Forums. I am glad your condition has stabilised. I am not a doctor, nor do I have any personal experience with the problems you have brought up, but hopefully our page on Morphea Treatments will give you some help. Others who have the condition should jump in and share the own experiences. As for your English, there is nothing I could fault in it. I'd hate to see how I would fare on a French forum. biggrin.gif


  12. Hello, Sue -- welcome to the ISN Sclero Forums. I am sorry you are having problems which seem to be evading your doctors at the moment. We are not doctors and cannot diagnose anything for you. It seems that your medical advisors are beginning to zero in on the problem and I hope things are resolved for you soon. I have no personal experience with Lichen Sclerosus but it seems possible that this problem is unrelated based on what I have read. You may found the link to our page on Lichen Sclerosus or Lichen Sclerous et Atrophicus useful in your search for information. In the meantime, please let us know what you find out as you work together with your doctors for information.


  13. Hi, Barbara. Hey, that's unfortunate, but isn't it good that you they happened to catch this through the registry? I liked your expression, "pitched a polite fit" and may use it myself.

     

    I don't have any personal experience with this, but we do have a section on Primary Biliary Cirrhosis (PBC) on our Liver and Spleen Involvement page which may be useful to read while you are waiting for your appointment in August. Keep us posted, please.


  14. Hi, JG07

     

    Please make sure to ask these questions of your pulmonologist tomorrow. I don't have any personal experience with lung issues, but a number of people on the forums are taking Cellcept at higher doses than yours. So much is dependent on your own circumstances, though, so you should work this out with your doctors. Are you seeing a scleroderma specialist?


  15. Hi, favord. Welcome to the ISN Sclero Forums. So glad you have found us, but sorry to hear about the problems being diagnosed. Many of us are in that place, but be assured that life goes on. Please take the time to familiarize yourself with our medical pages where you will find a huge collection of articles on related issues. I look forward to getting to know you better.

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