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Thread: I got the diagnosis/info please

  1. #1
    Join Date
    Dec 2007
    Thanked 1 Time in 1 Post

    Default I got the diagnosis/info please

    Hi everyone,

    Well, I wrote that I had a positive ANA. I also wrote about my skin which is doing much better. Well, I just saw my specialist and the ANA is still raised. I have signs of sorjornes syndrome and scarlerma derma. I bet I just massacred the names of those diseases. My doctor thinks I am going into remission which is good and I do not have to be put on any medications. I had already self-diagnoses and convince a nurse practitioner from the dermatologist office to give me a pred/pack.

    I am here first before I start researching. I am not ready to own this disease and will try all holistic methods to keep myself healthy. I was told to avoid stress.....ha!, not easy when someone tells you that you have a disease. I said I would keep you posted and this is the rest of my story.

    I know the above misspelled diseases are very unpleasant to say the least, but I will read until my eyes fall out to protect myself from getting them.

    My favorite things are the outdoors and boating. I own 2 boats. I am not willing to give them up. I understand there is protective make-up, sunscreen, and clothing. It would be most appreciative if some of you could make the best recommendations. I will alter my life but try not to change it. I am also, no fool, and will do what needs to be done to protect myself. I will take the advice from you fine folks who already know the routine.

    Many thanks for any feedback...way in advance,

  2. #2
    Join Date
    Nov 2001
    Victorville, California
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    Thanked 1,128 Times in 743 Posts


    Hello and welcome again AnneMarie;
    First, here is the correct spelling and a brief explanation of the diseases you mentioned:
    1) Sjogren's Syndrome:
    Sjogren's syndrome is a chronic, inflammatory, autoimmune disorder characterized by dry mouth (xerostomia) and dry eye (keratoconjuctivitis sicca) which are the two primary clinical features of this disorder. There are two distinct forms of Sjogren's syndrome: primary (occuring by itself) and secondary Sjogren's (occuring in conjunction with another autoimmune disorder such as rheumatoid arthritis, systemic lupus erythematosus, or scleroderma).

    2) Scleroderma:
    Scleroderma is a chronic disease which occurs due to excessive deposits of collagen in the skin or other organs. The localized type of the disease, while disabling, tends not to be fatal. However, diffuse scleroderma or systemic sclerosis, the generalized type of the disease, can be fatal as a result of heart, kidney, lung or intestinal damage.

    It is entirely possible to continue with those activities that you love, so long as you take proper precautions. Since exposure to the sun is our worst enemies, you will have to take extreme precautions in order for you to continue the outdoor activities that you love. Yes, there is protective clothing, makeup, sunscreens etc., but even with these precautions, you still must limit the amount of time that you are in the sun.

    In attempting to stay within holistic treatments, you should be aware of the fact that there are many herbal medications that will exacerbate the disease (cause flare-ups and/or make flare-ups last longer with more symptoms). So, be very, very careful with any herbal medications and/or supplements.

    Yes, you will need to alter your life....especially if you want to continue to do the things that you love. You may not boat as often as you once did, but you can still boat! You may not stay outdoors as long or as often as you once did, but you can still go outdoors. The primary focus of treatment in life-style changes in Lupus is to avoid a flare-up of the disease. As long as you keep this in mind, you could do quite well!

    In the meantime, we are all here to help you as much as we can; to provide answers, information, support and comfort when you need it!!

    I wish you the very best
    Peace and Blessings
    Look For The Good and Praise It!

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