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  • Clueless and could use some HELP!!!

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    Old 03-23-2016, 11:56 AM   #1
    2johndeereboys
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    Question Clueless and could use some HELP!!!

    Hello everyone......My name is Lisa. I am a soon to be 42 y/o (next month) who is currently under going testing for SJS. And thanks to the patient portal I have access to SOME of my results. And this is where I become CLUELESS......

    RF came back Positive.....no number just positive
    RA Titer came back 1:2 .....
    And I THINK my SS/A & SS/B markers came back Negative
    Sed Rate came back at 7
    CBC looked good......only had 2 flags......RBC was a tiny bit high & my MCV was low.

    I have struggled for over 3 years to keep my Vit D level within the normal range.....had it tested in late Feb (2016) came back at 14.....taking 50,000IU once weekly for 4 weeks and 1,000IU everyday.

    I am aware that "healthy" people can have a positive RF......I have been tested several times for RF over the years and it has always came back negative.

    I have CHRONIC dry mouth, muscle aches, joint pain & fatigue. Altho I will say since taking the Vit D my fatigue has gotten better. My dry mouth has been with me everyday of 2016 so far!! I experience it to some degree or the other. Some days are worse than others but it happens EVERYDAY.

    I am trying to deal with my symptoms myself. I use Biotene toothpaste & try to have a drink everywhere I go. But when I can't I use the ACT dry mouth lozenges. They WERE working well but not so much anymore.....

    My next appt with my rheumy is 4/1 to go over blood work results and possibly for a lip biopsy. But I have been waiting for weeks to get answers about my blood work and it is KILLING me. Waiting is so hard!!

    So if ANYONE could shed ANY light on ANYTHING......I would LOVE to hear from you!!!
    Sorry this turned into a chapter!!

    Thanks in advance for any replies!!

    Lisa

     
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    Old 03-28-2016, 08:17 AM   #2
    prizm 2000
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    Re: Clueless and could use some HELP!!!

    Lisa, sounds like Sjogren's to me. Similar symptoms occurred with me, and the lip biopsy confirmed my diagnosis. Began pilocarpine and plaquenil prescribed by rheumatologist. It seems to be helping. Don't give up...keep asking and describing symptoms...there is hope! I was told "no cure, but treat symptoms". Symptoms of dry mouth were my worst. Getting better with pilocarpine. Good luck...post after your 4/1 visit and let us know what the rheumatologist says.

     
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    Old 03-28-2016, 01:35 PM   #3
    2johndeereboys
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    Re: Clueless and could use some HELP!!!

    Thanks so much for your response!! I sure will post after my appt on Friday!!
    I just hope I get some answers. But I know getting a DX of an AI is a long process.

    Lisa

     
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    Old 04-17-2016, 09:26 PM   #4
    dmaht
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    Re: Clueless and could use some HELP!!!

    Please research the lip biopsy before you have it done. I've seen 3 different rheumatologists since I've been diagnosed with Sjogrens. One of them wanted to perform a lip biopsy. The other 2 said there was no reason for it because my blood work was enough for a diagnosis. They also said the tests are not conclusive. Many times they give a false positive/negative. Also, there is a chance of permanent paralysis of your lip. And, sometimes they don't get enough cells for the biopsy and have to do it again. Healing is extremely slow and painful.

     
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