Anyone with Lupus?

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Jan 18, 2006.

  1. greatgran

    greatgran Member

    Anyone Dx with cfs/fibro and it turned out to be lupus?

    Went to my doc and because of my labs he wants me to see a new rhuemy to rule our or confirm what he now thinks is now lupus..

    So I feel like I am starting this whole process all over again. He did say I had some type of autoimmune disease..which I think CFS
    could be an autoimmune disease, who knows not even doctors...At my age by the time the figure out what I have I will be so old it won't matter..

    Thanks,
    greatgran
  2. sarahann61

    sarahann61 New Member

    Hi Greatgran,

    It will still matter, no matter how old you get.. Getting a dx. will be the first step, in getting help. Sure hope, you don't get the run around. It seems , no matter how many Dr's I see, I always get a diff. dx.
  3. busybusymom

    busybusymom New Member

    Did you have a positive ANA? This is the test for lupus - mine was high the last month, but has been false-positive for years. I also have C4 complement deficiency (autoimmune correlated). My rhemy says I could have possible lupus, but isn't sure for sure.


    I also have CFS, which was originally diagnosed by positive Epstein Barr.

    It is very frustrating. Just research lupus on the internet and see if you fall into any of the categories. Personally, I think it is a very complex disease and can be misdiagnosed easily (which I was when I was in high school).

    Jennifer
  4. jaltair

    jaltair New Member

    I've been going through what you have been going through for two years now. My rheumatologist is confused. One reason that he told me (despite positive lab indicators) that I didn't have lupus almost two years ago is because I'm too old; usually younger people have it.

    Now, it's back on the merry-go-round of tests. I had a batch of tests over 3 weeks ago and requested then that I be sent via FAX to work the results. Last week "they (weren't) aren't in." Still haven't received them and need to call tomorrow to prod the office staff. Sometimes it's scary when they don't send results even when a paper is signed for them to be sent!

    You just reminded me about the tests.

    Usually with Lupus certain organs are affected.

    So, there has to be certain positive test indicators along with organs being affected.

    Lupus is something you don't want to have for sure. I don't! The drugs are horrendous to take. Then, there are remissions and worry about flare-ups. Lupus may be life-threatening.
  5. greatgran

    greatgran Member

    SarahAnn, I know what you mean by the run around this has been going on with me for 5years..Seems it depends on the doctor I see as to what Dx I get..So decided to stick with on doc and just when I began to accept the cfs Dx then something else will surface..

    Busybusymom, my ANA was 1:640, c-reactive protein was 22.5 my EBV positve..there were other abnormal labs but not related to lupus..my thyroid was fine and the western blot lymnes was neg..

    Jaltair, maybe this is one time age is a plus for me..I have researched lupus and I
    have some of the symptoms but I do not have joint pain..My pain is in my bones and muscles..never run a fever, so don't know if I do or not will just have to get another opinion...

    Thanks again
    greatgran





  6. Cromwell

    Cromwell New Member

    Don'y worry about the ANA being as shown. Rule out means JUST that. ANA tests are very innaccurate and only when they do double bind DNA tests can they get even close to diagnoses. ANA titers are tested by dropping an agent into blood and seeing what titers show when fluid is diluted (this is an over simplification but about what happens) so a lot depends on who is diluting, steadiness of hand holding the "dropper" etc. Make sure you get double bind DNA TEST. I even get butterfly rash on face but having been told years ago I had LUpus, once I had three DNA studies that did not show this, I go with not Lupus. The double bind tests are pretty accurate. Don't know how old you are (my cousin was great gran at 60) but it is highly unusual that lupus would appear at your age unless you have had it undiag. for many years of course. My 78 year olf mom in law was diag. with RA last year even though this was first pain she ever had in her life. I still doubt that rheumy, I think he did not test well enough. Good luck, don't worry, wait for rule out tests nine out of ten DO rule out.
    Anne(Crom)