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Thread: I dont know what to do again!!!

  1. #1
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    Default I dont know what to do again!!!

    Hi everyone, i am going through a difficult time with the doctors and i am at a lost on what else to do. I feel as thought i am spinning and it wont stop. I know that you guys give some great advice and reassurance and thats why i decided to post my concerns, because you all seem to understand everything the best and the support is overwhelming.

    I have posted in here sometime ago, and it was concerning my ana results and symptoms. Here what has happened since. Well to referesh your memories, i have been having some disturbing symptoms about 4 years now and its just about 2 years investigations have really started with my situation. It started with seeing floaters and getting this pain on the left abdomen that went towards the lower back. The pain is always there, sometimes worst than other days and under my rib cage always seem soar. I did renal function tests, kidnsy test, urine analysis, CT scan, ultra sound and all came back normal. I mean i shouldbe happy about that right! sigh. Did ana test, and all the other tests that follows that after being positive. The two times i did the ANA test the results have been 1:40 fine speckled +, the second time it was still 1:40 but coarse speckled ++. At that time the DS DNA always came back 1:10 Negative. The recent test i did was just on January 18, 2010. The results for that was my ANA was 1:40 nuclear ++ but my DS DNA is 1:10 positive. What i want to understand here is how come previously the DS DNA was 1:10 negative and now it is still the same reading but POSITIVE? Is it because the pattern changed?

    My symptoms are:
    Hair loss, muscle aches (muscles burn and get tired in legs when walking up stairs and hand muscles ache when lifting), sternum pains, blue nails when in cold, swelling of the lower extremities of my legs, increased floaters, lower left abdominal and back pain and sometimes some small trembling of the hands.

    My rheumy suspects SLE when he saw the DS DNA being positive, but for some reason he still hasnt confirm it, because he doesnt think that i fit the 4 criteria or something out of 11. He referred me to a Dermatologist asking her if she thinks i have lupus and if the hairloss is due to that and if she thinks i shouldbe on plaquenil. I dont know why on earth he sent me to her and yes i did go today, and at first she said i could have lupus, then she got confused cause the rest of my test are all normal. Its like she searching for something and she cant find it and you know whats the greatest, at the end of it all, she thinks i am depressed and paranoid and maybe i should read up on that. Boy did i get mad, imagine she would tell me that. So what about my ana and ds dna, thats cause i depressed? I should have never gone there, she just made me feel worst.

    Here are my results of my test:

    WBC, RBC & PLTS APPEAR NORMAL

    ESR - 16

    ENA
    ANA 3

    Anitgen Intensity Class
    RP/Sm 1 0
    Sm 3 0
    SS-A native (60 Kda) 1 0
    Ro-52 recombinant 1 0
    SS-B 2 0
    Scl - 70 1 0
    Pm-Scl 1 0
    Jo-1 2 0
    Centromere B 1 0
    PCNA 23 +
    dsDNA 2 0
    Nucleosomes 1 0
    Histones 0 0
    Ribosomal P Protein 1 0
    AMA-M2 0 0
    Control 97 +++

    Class Explaination
    o Negative
    (+) Borderline
    + Positive
    ++ Strong Postive
    +++ Strong Postive


    ANA ANF 1:40 DILUTION Nuclear ++

    ANTI DNA 1:10 DILUTION POSITIVE

    C3 and C4 normal
    CPK Negative
    RF normal
    Liver Function Normal

    So anyone could tell me whats going on here? Anyone with anything like this or similiar? Please help. I dont know what i should do, Best bet is to go back to the rheumy with the so called "depressed" diagnosis of the drmatologist. SIGH

  2. #2
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    Welcome back.
    Don't let anyone tell you that "it's all in your head". Keep looking for an explanation and a doc who will be respectful.
    Saysusie is our expert on lab results. I'm sure that she will be along to explain them to you.
    Good luck, hang in there, and keep coming back to talk to us.
    Hugs,
    Marla

  3. #3
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    OMG!!!!

    It's like im reading something i have wrote exactly!! The only advice i can give is ''DONT GIVE UP''. I am in the same boat as you except recently it all got to me and i nearly gave up! You are sick,you feel it, your body is telling you,so always listen to it. Yes you are depressed like me because we are going round in circles and getting nowhere.Me and you are in need of finding a good doctor.One day we will,look at all the members here who eventually DID get the help.So keep posting,one of the members here may be able to help you if not all the members. I know its not in your head and hopefully soon a Doctor will help you,just hang in there.We are a button away if you need a chat!

    love n hugs and understanding
    Amanda.xxxx
    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

  4. #4
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    OK - I am so sorry you are going thru this...thats BU*&^IT! Paranoid? WIth symptoms AND a positive ANA and antiDS-DNA? DO NOT GIVE UP - Amanda is right. I am one of those who was put thru the ringer as well. HOWEVER, I have to say that I DID contribute to my Dx taking longer and that is because I used to get SO FED UP and sick and tired of seeing NEW docs, and explaing the WHOLE story again that on a couple of occasions over the course of a few years - I stopped seeking treatment. I either wouldnt go back to a doc, or never did the follow up, felt better and said "Im not sick, see? It WAS all in my head!"....You name it, I did it.
    However, I would then go into a HORRIBLE flare, call to see a doctor, have to WAIT and by the time I got there I would be better again, or my test results would be normal. In 2008, I made a COMMITMENT to not give up (though I did blow off a few appts when I was feeling good - bad bad Lauri). I did, though, ALWAYS see my regular PCP - who thought lupus from the beginning, and would not back down from ANY rheumie who thought no. I was officially Dxd in 2008, went in a "little" questioning again (this one was mine - I dont have lupus..Im FINE). Then it had flare of lupus pneumonitis in my lungs and then kidneys.
    Anyway, yes I have a Dx and if someone said to me just 2 years ago that Id be saying that - Id say they were crazy. PLEASE try to hang in there..I know how hard it is. I would absolutely petition for a second opinion. Even the jerks Ive seen here would at least start you on Plaquenil to see if it helps.
    Hope this helps...you are not crazy (or if you ARE - its becaue of THEM!). The last thing we want is to be sick....but we ARE..and we want to be TREATED
    You are in my prayers

    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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