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Thread: Diagnosis for Lupus.

  1. #1
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    Question Diagnosis for Lupus.

    I am a 33 y/o man serving in the army. I have been experiencing very intence joint pains for quite some time now, along with many other symptoms. It is a dull but constant burning pain that is also now starting to effect my entire body. I do have a family history of Lupus. My other symptoms include, but not limited to; Fatigue, GERD, feelings of weakness, poor memory, ADHD, persistent sores in nostrils, chronic sinus congestion, inability to concentrate. Most pain meds, prescribed or OTC, seem to have little to no effect (6 motrin, 4 tylenol, 2 neproxin, and 2 shots of nyquil, thats what it takes sometimes, cuz yea thats healthy for me right). I have noticed that the pain worsens with alcohol consumption. I have been off and on several arthritis (thats what "they say" I have) meds with no impact. All my research over the past 2 months has lead me to believe that this is what I have. I used to be VERY healthy and VERY fit, now I struggle just to make it threw the day. Is there anything that I can do to help convince an army doctor (a PA by the way) to at least take me serious enough to send me to a rheumatologist for further evaluation?

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    Hi FedUp,

    sounds pretty awful.

    Diagnosing Lupus is really difficult, because most of the symptoms are subjective. However there are blood tests that are pretty specific to Lupus. Yet the problem with them is that they don't always show positive, even if you have Lupus! But if they ARE positive it is a clear indicator that something Lupus-y is going on. The problem is getting your doc to test you for them.

    This is because doctors HATE patients telling them 'what they need'. Because 99% of the time, they are wrong. Docs see a lot of malingerers, hypochondriacs and people who just don't want to believe they have x disease, but want y or z because they mentally/socially cope with y or z better.

    Doctors also HATE people who diagnose themselves via the internet. With things like lupus, the internet can really be helpful, but if you have ever googled your symptoms for a flu/virus and been convinced that you have leukaemia.... doctors have spent 6,7 years being trained on how to interpret symptoms (and more importantly, SIGNS which are things the doctor sees but the patient doesn't notice) and to be told by Joe Bloggs that they are wrong and Google is correct.... gets doctors' backs up very quickly.

    My advice would be to go to your army doctor and be honest. (doctors hate people who aren't honest and have a secret agenda!) Say that your illness makes you think you can't continue in the army, that you desperately want to continue and need to sort this out no matter what it takes. (ie. this tells the doc that this is important and debilitating, and threatens your service)

    Say that you've been so frustrated that you've been trying to figure this out yourself (not just "I've been googling my symptoms") and that you are really concerned that it's more than just arthritis, and you are especially concerned that it could be this related condition, Lupus. (not "I have diagnosed myself with Lupus")

    Your doc will probs sigh and think "oh great, another guy who irrationally thinks he has an incredibly obscure illness" so say at some point that you really hope that it isn't Lupus because it's really nasty, attacks your kidneys and is difficult to treat and there's no cure ... but that you need answers so you can get treatment. (this tells the doc that you are realistic and not a hypochondriac).

    Let the doc talk and ask questions and stuff, but make sure that by the end of the interview you say that there's a couple of blood tests that if they are positive, are pretty good indicators for Lupus - Anti-nuclear-antibodies (ANA) especially.

    Now I don't know how expensive ANA testing is, but if orders it, and it does come back strongly positive, THAT is clear indication to be sent to a rheumy.

    If the test comes back negative or if he won't order it, change tack and talk about the arthritis. Say that the meds just aren't working, and that all the docs are trying their hardest (a bit of flattery to soothe egos) but it all comes to naught. So you want to see an arthritis specialist.

    Good luck!
    Before you diagnose yourself with depression or low self-esteem, first make sure that you are not, in fact, just surrounded by a-holes.

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    steve.b (03-13-2012)

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    Brandywine said it all! All that I can add is be sure to read the stickys at the top of each forum. There is a lot of good information there for you to arm yourself with. I'm a military wife, and the very worst rheumatologist that I ever saw was at BAMC in San Antonio. He was my first rheumy. The second one was a civilian doc, also in SA. She was fantastic. Then we had a PCS, and I'm back to seeing a bad rheumy.
    Good luck - I know what a pain it is to deal with military docs.

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    I am so sorry that you are going through this. So many of us have to go months, or even years, without a diagnosis since there is no actual test for Lupus and because too few doctors even understand what it takes to make the diagnosis. As brandy said many of the tests come out negative even when you have it but even if they come out positive you can't be diagnosed based on a single test because there isn't one. According to the Lupus Association you must have at least 4 of the 11 symptoms of Lupus AND all other reasons for the symptom must be ruled out. This gives doctors way too many reasons to discount what we are saying.

    I am going to post the list that we have here at WHL although I believe someone had a newer list of criteria and, if they are reading this, please post it again so we can make it a sticky!

    Hope this helps a little and maybe the list will be enough to get you to a specialist.

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~

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    hi fed up,
    and welcome from another ex military person.
    i spent 12 years in the ausrtralian airforce.
    i had many of my symptoms then, but they dismissed most of them, and werenot concerned about the rest.

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