Results 1 to 5 of 5

Thread: Hi New Here

  1. #1
    Join Date
    Aug 2014
    Posts
    4
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default Hi New Here

    Hi my name is Ashley I am 26. I had been having signs of raynauds for over a year and my hands falling asleep a lot but I never went to a doctor cause I had no insurance at the time. finally got insurance a few months ago and went for a physical at my primary doctor last month so I told her about how my hands and feet would turn white and purple when exposed to cold and how they fell asleep a lot and she suggested it may be a autoimmune disorder so she ordered a ANA test. It came back positive with a titer of >=1280 and speckled pattern. I done enough googling to realize it was high. She referred me to a rheumatologist and my first appointment was this past Monday. he asked a million questions and diagnosed the raynauds and ordered some additional bloodwork because he said I may or may not have lupus and we will know more after those test results come back. Well at 2 am I just received a email with a new lab result and it was my anti smith antibody, it said normal range was less than .01 and mine was 3.8. Is this considered very high? still waiting on the anti-dsna test to come back. with the positive and high ANA and the positive anti smith and the raynauds and I also have radiating joint pain is it safe to say I have lupus? I don't go back to the rheumatologist til September 8th. sorry so long new to all this and just want to know what to expect

  2. #2
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,964
    Blog Entries
    1
    Thanks
    1,414
    Thanked 1,645 Times in 1,130 Posts

    Default

    hi Ashley.

    sorry we cannot really help diagnose you ....
    we are not doctors.
    but we can help by talking about our experiences and knowledge.

    it is good that you are getting lots of tests.
    more tests help rule out more possible options.

    it is a very confusing process to work out exactly what disorder we have.
    there is about 63 different auto immune disorders,
    and most have overlapping symptoms

    also it is common to have more than 1 of these disorders at the same time.

    I see you are worried about the anti smith test.
    remember that it is also positive if you have had other viruses as well.
    Epstein-Barr virus infection is a common precursor to this.

    it is not easy .......
    but waiting for more results to come in will give you a more precise picture.
    knowing only 1/2 of the results can show bad signs, but more results can then rule these things in or out.

    please keep us informed as to your progress.
    we are here to help and support you.
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

  3. The Following User Says Thank You to steve.b For This Useful Post:

    Saysusie (08-26-2014)

  4. #3
    Join Date
    Jul 2014
    Posts
    16
    Thanks
    0
    Thanked 8 Times in 7 Posts

    Default

    Ashley,
    Hi and welcome!
    I also have raynauds (I always have though)... I can offer some tips for help with that. One, cold is a big stresser of raynauds. Some of us carry gloves with us, especially to grocery stores even in summer. In a pinch, as weird as it seems, sticking your hands under your armpits works too. I have USB rechargeable handwarmers, they're pretty excellent. I think the worst part of having non-ulcering raynauds is when the blood rushes back and then my hands become swollen, red & almost itchy - like a foot that fell asleep and woke back up.
    Things like caspacian cream work well too, HOWEVER, I do not use this, as I have a bad habit of rubbing my eyes after.

    While a positive Anti smith leans towards lupus, whether or not a rheumatologist will say its lupus is up to them and if they feel you meet enough of their criteria. As far as is it high? Its high enough to not be a false positive(depending on assay used, I think the one used for me maxed out anti smith at 4 or 7, I cant remember which, but its under 10) , but being high doesnt correlate with disease activity if you have lupus. So dont worry about how high it is. As far as the ANA, same thing. Its high enough to take notice, but doesnt correlate with disease activity. If you have symptoms, then the fact that the ANA is so high rules out a few auto immunes usually.
    Chances are the rheumatologist will retest, as they usually only trust their own labs. I know mine doesnt trust the multiplex assays.

    The big thing is, you will be watched for symptoms, and hopefully treated for any symptoms you have now.

  5. The Following User Says Thank You to Alicake For This Useful Post:

    Saysusie (08-26-2014)

  6. #4
    Join Date
    Aug 2014
    Posts
    4
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Thanks guys. My anti dsdna did come back negative. I mesaaged my doctor about my positive anti smith and he said it just means i could develop lupus in the future but it wasnt 100% positive i would. I have the high ana titer , the positive anti smith, the raynauds, tingly hands and ocasional joint pain. U think hes just waiting on more things to show up to diagnose me. I just want to know. Everything i read on like webmd and stuff says if ur anti smith is positive its most likely lupus. I think he just didnt want to discuss it thru a message online and wants to talk at my next appointment september 8th.

  7. #5
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,785
    Blog Entries
    10
    Thanks
    1,638
    Thanked 943 Times in 597 Posts

    Default

    Hello and welcome!
    Lupus is an extremely difficult disease to pin down and diagnose. Also, its symptoms resemble those of other auto-immune diseases. The disease, itself, changes and symptoms come and go. So, doctors will not readily say "yes" or "no" to the first time that tests are run. Yes, many want to wait to see if other symptoms show up physically or in lab tests before they will give a definitive answer. However, please know that there are many who NEVER get a definite Lupus diagnosis.
    What is more important than a diagnosis is getting treatment for the symptoms that you are displaying. If your doctor is willing to treat those symptoms in order to provide you with some relief and to prevent them from exacerbating or to prevent others from appearing, then you can afford to be patient or to live with the lack of a definitive diagnosis. Please make sure to tell your doctor that you want treatment for your symptoms weather or not he feels it is Lupus or some other disease.
    Keep us posted

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

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •