please help little hapeewendy

  1. hey guys, I need some of your expertise here....
    auto immune disorders etc were never my strong suit in school, I muddled thru like many of us did but didnt care too much about all of it until now..

    Few months ago I had weird onset of uncontrolled fevers , went to family MD was told I had a virus,okay fine two weeks after that, terrible onset of arthritis in the small joints of my hands

    positive ANA titre of 1:320
    speckled pattern consistant with SLE

    family MD sent me to a rheumatologist who ran a whole bunch of tests , that have quite honestly frazzled me

    heres the deal if you could shed some light I would really appreciate it

    latest bloodwork results

    ENA antibody screen - borderline positive

    RO/SSA antibodies - borderline positive

    Centromere - Positive
    Scleroderma 70 antibody - borderline positive

    so I went from a diagnosis of lupus *which I was just coming to terms with* to now potentially scleroderma
    what has me so confused is the speckled pattern of the ANA smear....that usually doesnt happen with scleroderma does it?
    and my anti dsDNA came back negative, which again is usually positive in lupus

    I'm thinking scleroderma now, am going to my specialist tomorrow but being that I felt brushed off by him initially any input you guys could offer would be most appreciated

    (really shoulda paid more attention in this unit in school!)
    cheers
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  2. 15 Comments

  3. by   mattsmom81
    Gosh, Wendy, I'm thinking good thoughts for you and hoping for the least worrisome of diagnoses here for you!

    Would have to defer to a Rheumatologist--this is way beyond my nurse brain... perhaps there are rheumy nurses on this BB?

    Thoughts and prayers, as well as hugs, for you! :kiss
  4. by   ERNurse752
    I have no idea...just didn't want you to think you were being ignored. Please keep us posted, and I'll be praying for you.
  5. by   hapeewendy
    thanks guys
    glad to see I'm not the only one who cant figure this thing out
    I'm going to my rheumatologist tomorrow
    was just freakin out cuz I got my hot little hands on a copy of my results ....always a bad thing
    I will keep you all posted
    thanks for your thoughts n prayers
    whatever is going on I will manage.....there
    are so many sick ppl out there, I'm lucky!
    cheers!
  6. by   zumalong
    http://www.uklupus.co.uk/ldt.html

    This web site had some good info on how lupus is dx. I am sorry I dont have more information for you.



    Will say a prayer that all goes well. It is very difficult having a chronic disease. If you ever want to talk you can email me directly Clong001@rochester.rr.com.

    I don't have lupus--but I have severe asthma (talk about sick time!!!) and osteoarthritis.

    :kiss :kiss Cheryl
  7. by   Marianne518
    Don't have any answers or suggestions for you Wendy, but I will keep you in my prayers.

    Marianne
  8. by   duckie
    Prayers and good thoughts are sent your way. Keep us posted. God Bless!!!!
  9. by   P_RN
    Same here. I've always felt that it is better to know what you face, no matter what it is. Will be saying special prayers for you .
  10. by   hapeewendy
    thank you for all your positive thinking
    I went to the specialist today and he says that to him I dont exhibit any symptoms of scleroderma and he is sticking with his original diagnosis of early onset systemic lupus

    I dont know if I should be happy or not, I do feel relieved that I know what I'm dealing with here...
    the specialist suggested that I take a few days off to recouperate from what he thought was my first flare up , so I'm taking his advice and stayin off til monday..
    he suggested longer but I feel guilty staying off work when I feel okay....

    once again thanks for everything
    its nice to know that we are able to support one another from miles away
    cheers!
  11. by   RNforLongTime
    Well, I guess you got some "good?" news? Anyways, I'll keep you in my prayers. It IS nice to know that we have such a wonderful support system here even though we are thousands of miles apart--some of us anyways.
  12. by   fairyprincess2003
    Hey there
    As soon as I started to read your post I thought lupus, then I got to the end, then I just read your last post, which it was brought back to lupus. Everything to me seems to indicate lupus, although the negDNA is iffy. My ex boyfriends mother had lupus. She had it for many years. She goes through stages, it has been managed really well for the most part with her. The most side effects she has seen were/are from the steroids, she gained weight. She was sleeping a lot for a while, but is now doing a lot better. Her biggest problems were dealing with the effects of her meds. I know I can get you more info, but its late now so I will get back to you if I can. I hope you feel better and you are in my thoughts Hang in there.
  13. by   Jenny P
    Hapeewendy, have you been to the Lupus Foundation of America website yet? There is someinteresting info there on both lupus and scleroderma. Try checking out this site for info:
    http://www.lupus.org and even their info site
    http://www.lupus.org/education/types.html


    My sister's S.O. has Lupus and works as a supervisor for a railroad crew. He has been diagnosed for years, and by listening to his body and following his doctors' good advice, he has done quite well so far. He does refuse to get married to my sister because he doesn't want to "burden" her with a sick husband -- so they just live together instead!!!!


    I also know a nurse with scleroderma who has jokingly referred to it as her "anti-aging disease" with her "non-wrinkling face." She does have problems at times, but is very upfront with everyone when she is having a flareup. I've never worked with her, I just know her through a professional organization, so I don't know how it affects her work.

    I shall keep you in my prayers. My hubby has M.S. which is another autoimmune disease, so I can understand some of what it is like to get a diagnosis like this. Take care of yourself!
  14. by   micro
    happeewendy............i love you.......

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