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Thread: Not diagnosed

  1. #1
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    Default Not diagnosed

    I have had "lupus-like" symptoms for 4 years, really probably longer, just not connected by the doctors. Nothing life threatening, joint pain, joint stiffness, skin rashes with itching, UTI, yeast infections, pleurisy, difficulty sleeping....... FANA was slightly possitive at 1:40, speckled and dsDNA was 1:20, many other blood test results were either very low normal or high normal. Blood pressure has been 145/91 quite a bit. Not diagnosed with anything for sure.

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    Default Hard to get a definate answer

    I'm really frustrated too! I have been having symptoms for almost 10 years now and haven't been able to find out exactly what is wrong! I have a blood disorder called anticardiolipin antibody syndrome that has my blood 3x thicker than normal. That was diagnosed because I have had 7 TIAs (Mini-strokes) or Bells Palsy, depending on which Dr you ask....I have also had the normal joint/ arthritis pain, lethargy, rashes, breathing problems, etc.... I had an ANA test 2 years ago that came back speckled 180 and last week it came back 320. Obviously something is going on w/ me....I go next week to speak to a specialist.

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    I have not been diagnosed either. Trying to find out what is wrong, and how to get well, what to eat and not . And i plan on studying this forum to learn what i can. thank you !

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by Rosi View Post
    I have not been diagnosed either. Trying to find out what is wrong, and how to get well, what to eat and not . And i plan on studying this forum to learn what i can. thank you !
    Hello Rosi, and welcome to WHL. Just an FYI, this thread is quite old, so you will most likely not recieve a reply from the original author. Sometimes new members miss the date in which a thread was posted (I've done it many times), and wonder why there is no response. I hate to let anyone feel ignored, so I just wanted to let you know that clicking the New Posts icon at the top left of the page will take you to the latest active posts by current members, and you are pretty much guaranteed a response there. And of course, you are welcome to start your own subject/thread if you like. Please make yourself at home, and enjoy!

    Rob
    Moderator

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    OK Rob, thank you, i just liked this thread and its ok if nobody answers me. Thank you !

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    Hi Rosi;
    Welcome to our family . I am glad that you found the post and felt that it had some relevance to you. WHL was, as Rob mentioned to you, only about 1yr old at the time of that post and I was still learning how to moderate (lol). Now, it bothers me that the first response to that 2002 post was in 2003 and it wasn't even from me (uggh).
    I hope that I am doing much better in responding to posts and Rob is always on top of things.
    Again..welcome to our WHL family where you will always find that there is someone here to chat with, answer your questions, or to just offer you support.

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

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    Hi Rosi,

    Welcome to WHL! There are many of us in the same situation as you. Sadly it takes way too long for many of us. We are glad you are here and I look forward to getting to know you better. Stay safe and without pain.
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Quote Originally Posted by Saysusie View Post
    Hi Rosi;
    Welcome to our family . I am glad that you found the post and felt that it had some relevance to you. WHL was, as Rob mentioned to you, only about 1yr old at the time of that post and I was still learning how to moderate (lol). Now, it bothers me that the first response to that 2002 post was in 2003 and it wasn't even from me (uggh).
    I hope that I am doing much better in responding to posts and Rob is always on top of things.
    Again..welcome to our WHL family where you will always find that there is someone here to chat with, answer your questions, or to just offer you support.

    Peace and Blessings
    Namaste
    Saysusie
    FYI... You and Rob both do a wonderful job of answering posts. Ya'll make all of us feel welcome and we are thankful for it
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Hi Rosi,

    I too am not diagnosed yet either.Its not that i want it to be LUPUS but i know my body and know for sure something aint right! Joint pain,swelling,hair loss,huge migraines,jaw pain,rashes,nose sores n ulcers in the mouth,depression severe anxiety INSOMNIA omg is that an awful thing to have on its own!! Many more symptoms.
    In the beginning was told it was a nervous breakdown and the doctor i think just wanted me to go away. I did. As the years went by i got sicker and since then have been fighting the doctors all the way.
    Always remember doctors are human and are not god.They make mistakes,some have an attitude and some actuallt listen n help.Dont be intimidated by them.Change doctors as many times as you feel you need to if you feel they are not taking you serious.YOU know your body!!
    Since the first diagnosis i now know i have Asthma,Raynaurds,srjogrens,depression n anxiety,Insomnia,Acid reflux,Ibs,Migraine,fibromyalgia, they think i have ME/CFS and this is what i dont believe as i have waaaaaay to many other symptoms.My rheumi said it was Lupus to change his mind.So ive just been tested again.Im not holding my breath.I just know through knowledge and my symptoms its not ME/cfs alone.
    So keep posting.Many of us hear ya and understand you.Some members here waitied years for a diagnosis,no matter what it was and yet some were diagnosed quick.Hope my ramble haas helped a little.
    lots of love
    Amanda.xxxxxx

    P.s Sad this wasnt seen before but it happens,noones fault.ROB you are the best!!!! x
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    Hi Rosi,
    Your like myself enjoying the understanding of the other member's who have been terrific since i joined.
    I've been diagnosed with SLE/Lupus and was born with it, they're not treating me with medication but hopefully come next Tuesday they will start me on medication and i'm still awaiting another 11 blood results and i wish to god i hope i get them also mate.

    I do hope they can sort you out quickly so you know where you stand, as i find it a terrible illness to cope with but everyone is different.

    Hugs Terri x

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