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New to site and looking for advice

Discussion in 'Living with lupus' started by smudger, Oct 9, 2010.

  1. smudger

    smudger Registered

    Hi All. I'm a 26 year old male and first noticed this "butterfly rash" appear on my face 3 years ago and over the course of 18 months was perscribed various medications to treat rhosesia to no avail and in the end gave up. over the course of the next 18 months I started to have other problems like joint pains in my ankles and wrists, I'm constantly tired, I've had chest pains and have blacked out a couple of times for what seemed to be no apparent reason. It's been fairly stressful at work recently and assumed that these symptoms were because of this but none the less decided to see the quack again who sent me for various blood tests. Two weeks ago I recieved a letter advising that the results had tested positive for "lupus anticougalants" and that I would need need to make another appointment in 12 weeks time for more blood tests. Needless to say I contacted my GP to discuss the results last week and was told that I have SLE but would have to wait until a second test is done in December to determine how it's progressing before he would perscribe treatment etc...... My first question is whether he can actually say I have SLE at this stage but secondly if he IS correct should I be doing something about it now rather than waiting for further tests in 3 months because internet research on SLE sounds pretty horrendous?!?!?.........Or am I being a hypochondriac!! Thanks in advance for you response.
     
  2. greenhaggis

    greenhaggis Registered

    Hi there and welcome,

    I have moved your post to a thread of your own that way you will will get answers just for you and not those aimed at someone else on their thread. :)

    The test for lupus anticougalants is conencted to an illness called Hughes Syndrome (or otherwise known as APS). Yes you ususally do have a follow-up test if positive repeated in 3 months.

    The name of the test is confusing and has no connection to SLE....having positive for lupus anticougalants does not mean you have SLE.

    Now I can't say that you do not have SLE as you may have other medical symtoms alongside the lupus anticougalants positive test etc and the redness on the cheeks that have instigated your GP to say you do.

    Please take time to read the main site here...there is lots of inforamtion on lupus anticougalants and SLE.

    Unfortuanately I do have to dash out..so sorry my answers have been so brief :(.

    I'm sure someone else will be along to fill you in a little more.

    But....just more thing ....'no' you are not a hypochondriac you are just reacting to something your GP has mentioned.

    Bye for now!
     
  3. x_claire_x

    x_claire_x Moderator

    Hiya... can I just add that also be careful reading the internet sites, they are outdated and quite terrifying!! Most of us on diagnosis have gone online to our detriment... it can be quite unnerving!!!... the information on here is far more helpful and productive and correct...you also have the benefit of communicating with people travelling the same path. I assume you have been referred to a Rheumatologist as they are the ones who manage auto immune diseases.... and oversee your care if you are definitely diagnosed. It is helpful to have a Rheumy that is knowledgeable in auto immune disease, as some are downright dangerous!!.. please keep a daily diary and pain grade any symptoms 0-10 for severity and also take any photos of visible (like your facial rash..) signs/symptoms.... Drs like informed patients, but also like to think they thought of it first!!!!...all the best,
    Claire
     
  4. Maia

    Maia Registered

    Hello and welcome. Sorry for what brings you here though.

    It is appropriate to retest your for lupus anticoagulants in 3 months time. If you have *not* had any blood clotting episode, then you actually may not be treated at all for this issue, and may not even be diagnosed with it. I've tested positive for a related clotting antibody called anticardiolipin on a few occasions months apart, and without a clotting episode the only treatment recommended for me was low dose aspirin while pregnant. In order to be diagnosed with Hughes syndrome or APS=anti-phospolipid antibody you must be positive twice 3 months apart AND have a serious clotting issue. A very sizable percentage of people who test positive for any of the clotting auto-antibodies will NEVER have a clotting incident so one positive test on this is really not too much to worry about. I recall this percentage being about 60% or greater.

    You may want to ask for a copy of all of your blood tests, and see if anything else has indicated that you may have lupus/SLE. Your symptoms certainly are consistent with lupus, and a positive lupus anticoagulant does count towards a diagnosis of lupus, but there are other tests that can be more important indicators of SLE such as a positive ANA (Anti-Nuclear Antibody) among many others. If there is another indicator of lupus in your bloodwork, then a diagnosis of lupus could certainly be warranted.

    I would also ask to be sent to a rheumatologist or to discuss your results with such a doctor, especially one that is experienced in treating and diagnosing autoimmune diseases.
     
  5. smudger

    smudger Registered

    Thanks for the speedy responses all, certainly feel a little more reassured that it's not all doom and gloom now!! I'll definately be asking for referal to a rheumatologist though as my GP seemed fairly un-knowledgeable on the subject. Will keep you updated on the outcome and will no doubt be back for some moral support if needed as most of my mates, colleagues & even the missues reckon I'm being a "big girls blouse" lol :)...........Really impressed with the site by the way, very informative and everyone on here seems to keep in touch. Cheers
     
  6. keebler

    keebler Moderator

    Hi Smudger and welcome.

    When you ask for a referral to a rhumey to make sure that the doc knows and understand autoimmune illness. Not all of rhumey know or understand.

    If you have any rashes take pictures and bring them along to your appointments.

    Let us know how you are doing.
    Take Care,
    Lyn
     

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