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Thread: Sorry for the long rant. Just frustration!

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    Default Sorry for the long rant. Just frustration!

    I'm SOOOOOO tired lately. I can barely move or lift my eyelids. For the last few months I've been going to the doctor with this horrible whooping cough that comes from the bottom of my chest. They've given me every antibotic under the sun and it doesn't work. They've given me codien cough syrup. All that did was made me forget about the cough and not help it. When i do cough it's so painful that I just want to cry!
    So this morning I went in to the doctor for a smorgis board of things (my regular physcian wasn't in so I had to see the other doctor. She was real nice.) I thought I had a UTI but come to find out that my pee was saturated with white blood cells. Some of them visably clumping together. My left lung isn't fuctioning and there isn't much air flow through it. And the butterfly is back across my face and the sores ALL over my tounge and cheeks are back and breading. She asked me if I've ever had a ANA test and I told her I had and it came back negitive. She said it's obvious that I have lupus and there are times that a false negative is prestent. I so wanted to tell her DUHHHHH!!!!! But alas I was a wearing my big girl pants today and kept my mouth shut. So she took more blood from me to test for lupus. Heck what other test could there be?? She didn't give me any drugs because she "doesn't want to over medicate" me. She wants to see me in two days to see how my lung function is doing. Holy cow!!! What a frustration!!! Has anyone been through this nonsense??? I want to see a rhematologist but I can't in this area with out a referal from my doctor first. What a crock!!! And my doctor wont send me until the test comes back positive. I feel like screaming, curling up in bed and not coming out until there is an answer. But again I must put on my big girl pants, look at the bright side. I do have two wonderful little boys and a husband that loves me.
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    I went thru the run-around with the docs for over 15 years, I guess... 'Course, I'm a man, so I can't have lupus - at least, that's what I'd heard a few times until this past spring. There are other autoimmune things can be similar to lupus (or would that be "lupus is similar to other autoimmune diseases"??), and lupus is called the great imitator. I'm not saying you don't have lupus, but no matter what your pcp doc says, you *really* should be seen by a rheumatologist at the least. If your insurance is like mine, you'll have to wait for the test results to come back. After that, they *should* refer you. If not, raise a polite stink about it and insist upon it. Tell them that you're worried. In the meantime, we'll be praying for you.

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    I'm lucky to be able to pick my insurance plan and had decided years ago that referrals aren't for people like me who see more specialists than anyone else I know. I remember how frustrating it is to require your doctor write you a referral, especially when it took convincing that dr you need one. It sounds like the covering dr you saw believes you will need one too. Perhaps you can make her your primary dr since she is obviously more convinced than your other dr that you are really sick. See what happens with the ANA this time first. Maybe she will decide on her own to send you to a specialist.
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    Best of Luck to you! The merry go round is horrible place to be! Hope you feel better soon

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    Here's the problem guys... I don't have any insurance what so ever. Devan, my husband tried to get blue cross and blue shield for us but since I have prexisiting conditions they wouldn't treat them and they wanted $300 a month for basic. Heck we can't afford that. But we can't afford going to the doctor either. I tired state aide and they told me Devan makes too much money. That if he only made $320 a month we would be qualified. Who could live on only $320 a month?!?! Don't get me on the rant of social security... That's a govermental mess right there. I feel like I'm stuck between a rock and a hard place with someone slapping me across the face. The Specialist wont take me without a referal and my doctor wont give me one until he's for sure that I do have lupus. Even though they say it looks like I do. ERRRRR.... it's a mess. Thank you tgal for the support and Sandy and Jmail for your input.
    A stranger is only family you haven't met yet.

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    hi potts,

    wow, you are really caught in the middle of a nightmare. If you have not been diagnosed with lupus, then how can the insurance company deny coverage (without a ridiculous monthly fee). Before my dr. diagnosed me, she advised me to get my ducks in a row with health insurance, life insurance, etc. Because, once diagnosed, Lupus prevents us from being elligible for so many benefits. You have been suffering with medical conditions, but lupus has not been thrown into the hat as of yet, so maybe there is some way for you to get coverage. If your company has an insurance representative, you might want to see if they can help you. But, I advise you NOT to mention lupus in these conversations, keep that to yourself for the time being.

    Also, I agree with Sandy, maybe you should try to switch to this latest dr. as your primary care provider. Hope you can find some help with obtaining insurance.
    Phyllis

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    I am sorry to hear that you are going through so much now. I will say, however, that at least this doctor at least believes that you have Lupus and is willing to run all of the tests, so you do not have to fight that battle with her. Having that big hurdle already out of the way will make it easier to get proper treatment from her. Too many of us are still dealing with medical professionals who tell us that it is all in our heads, we are hypochondriacs, or that we just DO NOT have Lupus. So, we spend much of our time trying to get a doctor to believe us and never get to the point where they are even willing to run the appropriate tests for us.
    I hope that you get the results of your tests back soon and that they help to provide you with some answers that will get you on the road to appropriate treatment. I know that, without insurance, this is all very frustrating and frightening. But, please know that we are here for you.

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    Saysusie
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    That is just ridiculous. A doctor is there to treat a person properly not to speclutate. And alot of these quacks just do that. They just hmmm and haaa, guess, then guess again. What if I want an answer? Maybe now would be nice. I don't remember if I blogged about getting chest xrays yesterday because the airway in my left lung wasn't sounding just right. OMG the pill pusher told me they haven't recived them yet! Can you believe that?!?! They haven't recived the xrays yet and weren't going to be able to read them until tomorrow. What horse pucky! It's because yet again I don't have any insurance and I'm put on the backburner. UGGGGGGG!!!!! *ruffles hair... now hair looks like it was styled with light socket* I want insurance but my husband did the bills we are so in the hole do to medical bills there is no way out.
    Phyllis I will have to go to a local agent instead of trying to do it over the internet. If I could get insurance that was less than a $150 a month I would jump on that. Thanks for your thoughts and concerns.
    Saysusie thank you for being there. I appreciate it.
    A stranger is only family you haven't met yet.

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    Hi Potts, I went through so many wierd, various illnesses throught my whole life it seems. Dr.'s never got anything right then, and they just give you antibiotics because insurance companies don't let them diagnose things like they used to. It sure sound like Lupus. The rheumy - they have so many more markers that they look for that the regular doctors don't. I hope you can get to a Rheumy! Maybe a second opinion from another Dr. would help. I'm sorry for your frustration, Dr.s just don't seem to do the right thing anymore and at everybodies expense. I hope you feel better very soon and get to the root cause of your issues.

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    If you don't have insurance, the Rheumatologist should see you,,,,no referral needed! Referrals are basically for the insurance companies.No insurance...non issue. Ask your MD for a copy of your blood tests so you have the ammunition when you go there,or send it to the Rheumy so they will see you. Just a few thoughts....hang in there.
    Andrea

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