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Thread: (Not-so-official) But NEW

  1. #1
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    Default (Not-so-official) But NEW

    Well, a few weeks ago, I started experiencing a skin sensitivity, where parts of my body ached and hurt to touch, like when you have a high fever. The a week or so into that, my joints began to ache. I decided to call the doctor, and of course this stumped her, and she sent me for bloodwork. My ANA was of course positive, so here I am. I have done enough research now that I almost can diagnose myself... but of course, I hope I'm wrong. The more I read though, the more I think... Wow, so THAT'S why I feel like that, and THAT's why I am too exhausted to keep up with my 2 kids! I am 28, with a 3 1/2 and 2 year old. A lot of the symptoms they list out there, I have been experiencing... some for years... but I attributed it to other things.

    I have an appointment with the Rhumetologist on Wednesday. I have no clue what to expect, but I think I'll be back shortly to confirm my suspisions. :cry:

    I want to be mad, I can't help being sad, but I have two little peanuts and a wonderful husband that need me to chin up and deal with it... so I will. I just wanted to introduce myself here, because I'm sure there will be times I have questions or need support, and its nice to see a forum out there like this!

  2. #2
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    Default Oh I know!

    Yes! We have to keep chins up! But I feel your dismay. In one regard, it's a relief to have an explaination for everything. But on the other hand you want to say "really"? It's been hard for me to cope with exactly how much about me and how I feel is related to the SLE. I too was attributing symptoms to "other things".

    But I think we've come to the right place! I joined yesterday and have already gotten more info. than I can process!

  3. #3
    Join Date
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    Default

    danicinstarz..

    Welcoming you with warm open arms...

    New, first time Rheumatologist can be frustrating, confusing to enlightening and bring relief...be prepared.

    Paper and pencil..

    List all symptoms, when, cause (trigger as we say in Lupie world). Even if it was 3 years years ago or yesterday. Lupus is an accumulative disease and not all symptoms at once.

    If he/she is requesting test ask what they are, be sure to get a copy of the results.

    Bring a friend, relative if possible.

    Don't feel intimidate to ask questions..make a list of them. Ask question of him, if he specializes in patients with Lupus and not just Rheumatoid arthritis.

    Read as much as you can, knowledge is key to being your own advocate for your health.

    It can take days to years for a confirmed diagnose. Know even without a diagnose they still can treat your symptoms.

    Don't be alarmed if you are the only young person in the waiting room. I am 47 and I usually am. No gray top, yet..okay not totally. Undercover of dye.

    Be well...hugs,
    Oluwa
    I have Lupus. So *^#@! what.

  4. #4
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    Default

    Thanks ladies for the welcome. I have so many questions I can't even keep them straight in my head... but I am waiting until after Wednesday to get too into this. I do have my Rhumy appointment that day, but I can't find any information as to whether they specialize in Lupus or not. We'll have to figure that out later. Thanks again for the warm welcome and I look forward to (as much as one can look forward to this sort of thing) learning and sharing experiences with all of you.

  5. #5
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    Default

    Hi and welcome to the site. I hope that your appointment with the Rheumatologist goes good for you. Make sure to list all of your symptoms and everything like that. Let us know how it goes ok.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  6. #6
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    Default

    Good luck with your appointment tomorrow dancinstarz

    Let us know how it goes and don't forget to make a list of questions and symptoms to take with you.
    Oh look ... a cookie

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