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  1. #1
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    Cool Newly diagnoses, long time suffering

    Hi all,
    I am newly diagnoses to Lupus as of last week. I have never had insurance and no doc has put together all the pieces to diagnose my lupus until recently, so in a weird way, I am very glad to finally have an answer. i guess it all started with rheumatic fever as a kid, then the worst growing pains in the world. My brothers would literally hold me down as a kid while I screamed in pain, and my mom would force feed me asprin until the pain subsided. I learned then how to disconnect from my body when the pain got too bad, as I'm sure you guys can relate too. I started having anginal attacks then too, and anxiety. At 15 i started with my arms swelling and going purple, then subsequently diagnoses with Thoracic outlet syndrom and Complex regional pain syndrome. Had many surgeries for those. I have arthritis, medullary calcinosis, atrophic bladder, total hysterectomy due to pain, horrible joint pains, etc etc etc. I have a doc that has been treating me conservatively for a year as he suspected autoimmune, but I didn't have the money for blood work and all that so he just did low dose steroids and pain meds. The last few weeks I went through a cancer scare, with swollen lymph nodes and a chest wall mass, and that is how they finally came to lupus. They showed me these lists of symptoms, and if you had 4 you probably had lupus. I had like 90%. I was like WOW, so I'm not crazy.

    I am currently going through the steps to get hooked up with a clinic that will treat me. They are talking about methltrexate(sp). For right now I upped my steroids really high and it helps some. Just got over pneumonia again last week too. I get it every year, usually december, but this year it came early, along with all the other crap I am going through.

    Anyways, Just wanted to introduce myself. I am real anxious to go read the threads on here from you all and learn all that I can about this horrible disease. Mine sure seems to be progressing quickly, and I want to know what to expect. Thank you all for listening.

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    babysister,
    Welcome to the site. Its good that you have an answer. I know all too well that something was wrong with me that the doctors were not finding. Finally getting my diagnosis of Lupus was really a relief. I am the type person that wants to know and then what can I do about it. Not knowing to me is worse than knowing. I can do something about it now. Even if its just take my meds and stay rested.
    I take Plaquenil, Asathioprine, prednisone, Ultram and flexeril. Its taken a while to get everything to work but finally I feel a little relief.
    Sounds like you have had a rough time of it. Maybe now that you know things will go better for you.
    This site is just great. Just jump in and make yourself at home. People here are the best. They do understand, will listen, offer suggestions that might help, support and pray for one another. Its an oasis in the desert of lupus! Look around and read the sticky's that have lots of information that will help you. Read the other posts as well. It will help you find answers that you may need. If not then ask... there are others here that know so much about Lupus. Again Welcome, others will be along to welcome you too. We are all kind of like family so welcome home! Billie

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    Hello babysister,

    I am new too.
    Happy to hear that you are finally getting treatment for your lupus.
    Good luck, I pray that you get good compassionate doctors to take care of you!

    Love, Bin

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    Hello babysister,

    I am glad they've been finally able to identify your underlining problem to the lot you've been through and i do know where your coming from as i was born with it myself and since the age of 5yrs all i can remember is ailment after ailment going on each year, all i used to hope for was a break but now my extended years i have left until i'm called is more severe problems.

    I wish you all the very best and where your pneumonia is concerned fryers palsam is a good remedy for clearing it off your chest.

    Terri x

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hello and welcome to our family
    You've suffered for quite a long time and I am glad that you have finally been diagnosed. Isn't it weird that we are happy to be told that we have a disease, just so that we know that we are not crazy!!
    You are in good company here and we are here to help you as much as (and in any way that) we can.
    If you are prescribed Methotrexate, you will probably be able to reduce your dosage of Prednisone. Please read through the posts here so that you can learn about the medications and what they are prescribed for and possible side effects, etc.
    I wish you the very best

    Peace and Blessings
    Namaste
    Saysuie
    Look For The Good and Praise It!

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