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Thread: Recently diagonosed lupus

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    Default Recently diagonosed lupus

    Hello all my name is Tom, from the netherlands,
    And since thursday i know i got CDLE.

    And they way the i find out i got CDLE .

    was i went to the doctor,

    for a swollen lymfeklier (lymph gland) behind my left ear.

    First he looked and said it good be a infEction,

    iff it would get worse i should come back.

    After a week still not gonne,

    I didnt go till my wife said,hey you got a red circle at the same spot.

    I went to the doctor,and he looked he said, i send you to the derma,

    Went to the derma and first she said do you hike..

    I said yes with my dog and family,

    Then she said here you got a tick medicine(lymedisease)

    start taking them.

    Had to give blood .

    and after a week i got the news no lymedisease.

    She made a new apointment with me to look at it again.

    Then Two days before i had to come back to the derma,

    I got a rash on my left side of the face. this i have the last two years now same spot never did anything with it,

    But the day i had the apointment with the derma about my left ear,

    She looked behind my left ear to see the swallow part and the rednness was less then before... she told me that tick medicine can work for more infections,She said iff you get it worse again just phone me.

    Then i said to her,Could you look at my left face now,i yust got it back and this i have over the last two years now it comes and gos.

    She looked at it and said there we take a biopsie from,

    I think its granuloma anullera she said to me.

    After two weeks i got a phone call.

    And she told me they found something,

    but i was not what they expected.

    Then she told me i got lupus CDLE.

    Now i know i got lupus,

    I am thinking off my other problems they sometimes occur suddenly.

    The first problem i have over years now every day.

    I Always sweat a lot at night.

    My wife notice it every time,

    I notice it when i have to go toilet a night and come back in bed,and its cold and wet.

    I have days that i wake up,and i can take my hand and sweep a lot off sweat off every were, i feel hot inside,

    and the sweat gos off and is back in minutes.

    iff i have backpain then i got it pretty bad,

    Like standing against the wall otherwise it hurts like hell, (31 years)

    most of the times in the underback and sometimes in the middle.



    My muscles in my fingers, hand ore wrist.

    Suddenly kramps ore whatever ,and it kinda locks it in a strange angle,

    open hand and suddenly one fingers locks itself and go near the hand,

    I have to try hard to get it out without helping with my other hand,

    Iff i reach the point its loose but when it comes close to the point it locks itself again,

    The same thing happens sometimes to my wrist,

    Also sometimes when i take a big breath i feel a pain in the middle of the chest, this stays a while and then its gonne,

    I have had this not many times but think like 4 /5 times the last year

    Not saying that this had something to do with lupus.

    But Could it be?

    Thnx In advance.
    Last edited by rob; 03-26-2012 at 07:04 AM. Reason: translated " lymfeklier" for clarity

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    hi tom.

    welcome to we have lupus.
    my name is steve, im also a male with lupus.
    we have a few regulars here who are male.

    it is nice to get to know our fellow members.
    one of the easiest ways is if you write on your profile page.
    please read mine to know a little more about me.

    again welcome.

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    Hi and wwelcome to WHL! I am really glad you found us. There are wonderful people here that are full of knowledge and will be able to help you come to understand what is going on a little better. You are now a part of our WHL family and you are not alone
    Mari

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

    ~Winston Churchill~







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    Thnx for the welcoming,
    I hope i got only CDLE.
    10 percent change to get SLE.

    i only think,....90 percent woman get lupus and i am with the 10 percent,
    Wouldnt be suprised to get sle to:-(

    But my other problems they sometimes occur whats that...has it something to do with CDLE ore worse.

    I orderd a few folderbooks about lupus,
    Still waiting for it,
    and the internet i surf a few days now about lupus,
    But talking with people that have the same disease is nicer.
    Cus i still dont really have a clue.

    I hate it btw that i have to wait 3 weeks before i get results,
    But they need to put it in(kweek)dutch word,
    It means stays somewere for a while ,were the SLE would react.(iff i have it)

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    Hi Tom,
    Welcome to WHL. We are an international cyber family, and we're glad that you found us.
    The guys have already greeted you, and I'm sure that they will be able to answer many of your questions.
    I just wanted to say Hi.
    Hugs,
    Marla

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    Thnx for welcoming all,


    So today i get a phone call,
    From hospital,

    They tell me some test were good,
    But something went wrong,
    And they dont have the result For A.N.A test and some D.N.A kind off test.
    I didnt hear him anymore ,i only heard something went wrong,
    And thinking i have to wait again.

    Today i went straight away again giving blood.

    I talked to the people from the blood lab,
    And they couldnt tell me exactly what went wrong,
    Maybe it fell ore something,
    Now i am home and think,
    Iff the drop the bloodtube testing for A.N.A.

    that had to be 3 weeks ago when they transport it,why not calling me then??


    Ore could it be after 3 weeks when they get it out a room and then drop it????

    I dont know i think its strange,
    Why they dont put something that went wrong on paper,
    so the person knows why it went wrong!

    2 weeks then i have a appointment with the hospital, then i get result and will he further investigate my problems.

    Any one have had this problem,with test went wrong?
    Last edited by Tom-31; 04-10-2012 at 05:47 AM.

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    when i have the appointment i gonna tell him my problems,

    But one thing is freaking me out,
    I always Sweat heavinly at night,
    I can get the sweat off any were and it comes back verry fast.
    My bed and sheats are wet and cold.

    Whats wrong with me i dont even use medicins at the moment.

    Like you can read in first message i had a lymphgland swollow behind my left ear,

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    Lupus attacks the body in different ways. There is actually a thread here about night sweats. I have a question though... what is CDL Lupus? I know SLE, Discoid and SCLE but I do not know what CDL Lupus is. Could you clarify please?
    Mari

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

    ~Winston Churchill~







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    Hi Mari,
    To answer youre question,Chronic Discoid Lupus Erythematodes.

    Mari did you read the other message above,
    something went wrong with the A.N.A test,
    Now i give blood again today,

    i looked at the bloodpaper today,
    And see testing on A.N.A and 3 other test,
    There was also E.N.A Test and anti-dsDNA test on the paper.

    now i read a few other internet site were it says,

    first site
    about 95% of those with SLE have a positive ANA test result. If someone also has symptoms of SLE, such as arthritis, a rash, and autoimmune thrombocytopenia, then she probably has SLE. In cases such as these, a positive ANA result can be useful to support SLE diagnosis. Two subset tests for specific types of autoantibodies, such as anti-dsDNA and anti-SM, may be ordered (often as an ENA panel) to help confirm that the condition is SLE.

    second site
    The anti-dsDNA test is used in support of a diagnosis of systemic lupus erythematosus (SLE) and distinguishes it from other autoimmune disorders. The test is typically ordered following a positive ANA test in people who have clinical signs that suggest SLE. It may be ordered along with another autoantibody associated with SLE, the anti-Sm (Smith antibody) test, which is often performed as part of an extractable nuclear antigen (ENA) panel. Depending upon clinical signs and the doctor's suspicions, additional autoantibodies may be ordered to help distinguish between, and rule out, other autoimmune disorders.


    iff the A.N.A test is positive they will do two other test.
    ENA TEST AND ANTI-dsDNA TEST.
    Why they test it on me ,
    they didnt had any result jet on the A.N.A cus something went wrong,
    But still testing on the other two?
    Last edited by Tom-31; 04-10-2012 at 09:44 AM.

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    Quote Originally Posted by Tom-31 View Post
    Hi Mari,
    To answer youre question,Chronic Discoid Lupus Erythematodes.

    Mari did you read the other message above,
    something went wrong with the A.N.A test,
    Now i give blood again today,

    i looked at the bloodpaper today,
    And see testing on A.N.A and 3 other test,
    There was also E.N.A Test and anti-dsDNA test on the paper.

    now i read a few other internet site were it says,

    first site
    about 95% of those with SLE have a positive ANA test result. If someone also has symptoms of SLE, such as arthritis, a rash, and autoimmune thrombocytopenia, then she probably has SLE. In cases such as these, a positive ANA result can be useful to support SLE diagnosis. Two subset tests for specific types of autoantibodies, such as anti-dsDNA and anti-SM, may be ordered (often as an ENA panel) to help confirm that the condition is SLE.

    second site
    The anti-dsDNA test is used in support of a diagnosis of systemic lupus erythematosus (SLE) and distinguishes it from other autoimmune disorders. The test is typically ordered following a positive ANA test in people who have clinical signs that suggest SLE. It may be ordered along with another autoantibody associated with SLE, the anti-Sm (Smith antibody) test, which is often performed as part of an extractable nuclear antigen (ENA) panel. Depending upon clinical signs and the doctor's suspicions, additional autoantibodies may be ordered to help distinguish between, and rule out, other autoimmune disorders.


    iff the A.N.A test is positive they will do two other test.
    ENA TEST AND ANTI-dsDNA TEST.
    Why they test it on me ,
    they didnt had any result jet on the A.N.A cus something went wrong,
    But still testing on the other two?
    Yes, I know what Discoid is. It must be just a difference in how we say it here in the states.

    I argue the 95% ana positive thing but I won't do it here LOL. Thank you for explaining the CDLE. Sometimes terms from the different countries get confusing

    I am going to post a link explaining how to get a Lupus Diagnosis below. Hope this helps a bit. One thing that we must ALWAYS remember. There is NO test to diagnose lupus. This is actually one of the reasons it is often hard to get a diagnosis

    Criteria for Diagnoising Lupus
    Last edited by tgal; 04-10-2012 at 11:35 AM.
    Mari

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

    ~Winston Churchill~







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