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Thread: newly diagnosed... or am I?

  1. #1
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    Default newly diagnosed... or am I?

    Hello all, Im Kristen, and going through the diagnosis process right now. My dentist actually recomended that I talk to my PCP about my horrendous mouth sores, thinking that I had pemphagiod. She did some blood work, and it came back with a positive ANA about 1:1300 (I think thats how you write it). She refered me to a rhematologist (which of course took 3 weeks about about 20 phone calls).

    The rhemy was actually really good. I couldnt pronounce her name, but she did a very thorough examination, all my joints, scalp, eyes, gums, even my cuticles!! They took about 8 more gallons of blood (and it took 4 stabs to get it, I've NEVER had that problem before). I do have a very slight rash across my nose, and I suffer from extreme exhoustion. (and bad spelling) My joints always hurt, and Im always cold. No matter what. My toes and fingers are usually blue or white with it. I never thought much of it before, because my mother is the same way. (which of course is now making her think she may have Lupus too). I guess it is odd to have such pain and only be 22, or have to sleep 9 or 10 hours a night, with my eyes barely open through the day.

    Anyway, Dr. Whatshername called my parents (Im away at graduate school) to say she had the results and to have me call her back. Well, I did. I've left 4 messages, three with machines, and two with people. NO one seems to know what is going on know. I guess I should have expected that since everything else went so well. Now i am SOOO frustrated. Im going out of my mind with worry, I feel like I cant do anything because I'll miss the phone ringing. I feel like time is at a crawl, I cant do anything until i get this phone call, and until someone figures out who I am and where my results are, that isnt very likely.

    So, sorry about the long introductory rant. i'll try to be happier more often . Thanks for reading, and I wish everyone a happy day!!

    Kristen

  2. #2
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    UGH glad you found a good dr that was so thorough but geez on the records. That would irritate me to no end. Hopefully they find them soon and you get some answers. I know from personal experience that the wait can be really hard on you. Hmmm probably wouldn't hurt for your mom to be tested. Mine was and found out she had RA (she already knew she had MS) but not lupus.
    Good luck, and don't worry we welcome all posts, happy or not!

  3. #3
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    Welcome Kristen. I really hope you get your results soon. I know how frustrating waiting for results can be. Hopefully these labs will help your doc give you a diagnosis. It takes years for some people to get diagnosed. Let us know what you find out. Take care.

  4. #4
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    Default I know how you feel

    Hi Kristen! My name is Ana and I'm also 22. I just graduated from college and am having a hard time with lupus too. I've had lots of different health problems the last couple of years, but only in April was I diagnosed with Lupus. The diagnosis process is VERY frustrating. I went to a couple of different doctors and had every test done 3 times! It's hard.... Currently I'm having a hard time finding new health insurance ( I lost mine when I graduated, and I can't be under my parents). I'm also having a hard time finding a job because honestly, I'd call in sick at least once a week.

    My advice for you would be to find a new doctor who is willing to call you back within one or two calls. My doctor actually answers his cell phone and calls me every so often to check on me. It's very reassuring!

    Good Luck!
    "Cuz HE! ain't no different from you
    N SHE! ain't no different from me
    So WE! got to live out our dreams...
    Unbreakable! ...
    We might have to take a break
    But ya'll know we'll be back next week"
    --Alicia Keys

  5. #5
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    Default They finally called

    She finally called me back with my test results. The blood work came back "normal" except for my ANA, which was still elevated. sooo... Good news I guess!! She still wants to see me every few months, since she's worried about it developing, which is nice and actually considerate of her. She also offered some medications for the fatigue, but Im going to wait for a month or so before taking her up on them. Im just trying some new aroma therapy stuff for sleep, and I slept like a LOG last night, and am feeling pretty well today! And I found out I aced my Neurology Final! Overall, a good day ! And I am SO relieved that she finally called me back. Even though I know im not totally in the clear, I get so nervous waiting for information like that. Thanks to everyone for reading and responding!!

    much love to all

  6. #6
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    I am glad you got your results and your doc is going to follow you closely and has offered treatment for your symptoms. I'm glad you are feeling better and it sounds like you are on the right track. Keep us updated on how you are doing. Take care

  7. #7
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    Waiting is the WORST, isn't it?

    So glad you're on the right track now, and getting the attention you need. Glad you're here among us as well!

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