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Thread: Seeking support and direction - please help

  1. #21
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    Hi, 4hugs. I think you need to write a letter to this doctor about his office practices. If this nurse is an LPN, she is not legally authorized to see patients unless she is being directly supervised by the doctor and she is certainly not qualified or legally authorized to act as a gatekeeper, so this doctor may be risking sanctions or worse.

    If your insurance is provided through your employer, getting your insurance benefits manager involved might help because they can put pressure on the insurance company to let you see another doctor. Most insurance companies have a list of participating providers - you can get this directly from the insurer by calling the number on your insurance card. You also need to let the insurer know about this doctor's practices, because they can certainly threaten to drop him from their approved provider's list. Call the insurer, ask for a supervisor or an ombudsman, explain your situation and ask what options you have about switching doctors. Be calm but assertive, and keep pushing for answers!

  2. #22
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    Default dont give up

    I'm 46 years old and have battled this stuff since I was in my 20's. I've only been diagnosed for a couple years! They treated me symptomatically for ever. It's a very frustrating disease. My labs played hide and seek. I had a barely there ANA, then a positive RF, then no ANA and no RF. Now I have an Anti-chromatin through the roof. I even stopped going to doctors out of frustration. But if you have slow moving disease and it isn't attacking your major organs, then it will take even longer for them to figure out if you don't continue to bug them. It's exhausting and expensive. But we have no alternative.

  3. #23
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    The nurse said to me, "I don't want you to ruminate about Lupus." My husband says "Why do you have to have a name for it?" You all understand, right? I need to know that on the days when I can barely move or am having chest pain and heart palpitations that I have an explanation and that, in time, it will ease up. I cant accept weakness and dependency but I absolutely cannot accept dependency without explanation.

    Just really tired today and feeling like a horrible mom for not keeping up with my kids and having no "reason" why not to.

    4hugs

  4. #24
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    Hon, you have nothing to feel guilty about - you are certainly not a horrible mom. and you are trying as hard as you can - your body just isn't cooperating.

    I know the insurance puts you in a bind, but I don't think this doctor is open-minded enough to work with to find your answers. I would suggest going back to the doctor who took care of you during your last pregnancy, explaining the pattern of your symptoms post-pregnancy, and asking for a referral to either an endocrinologist, or a major clinic or teaching hospital. The pattern of your illness remitting during pregnancy, and recurring post-pregnancy, suggests maybe there is a hormonal or endocrine problem, so this needs to be checked out. I know it's hard to fight back against the system when you're so tired you can't think straight, but you have to try, not just for yourself but for your kids.

    I think all of us understand how frustrating it is when you can't get the medical profession to take your symptoms seriously. But letting your frustration drive you away from doctors just hurts you, not them. So you have to keep pushing for answers and don't give up.

  5. #25
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    I can certainly sympathize, though I got dx'd fairly quickly. Of course, at first they looked at all the symptoms and tried to dx through them. Impossible because lupus does so many things to so many body parts. It finally had the malar rash which made a light bulb go off in my original doctor's head...and this was years ago. My initial tests were barely ANA positive, but it was enough to get me diagnosed, thank God. It IS better to have a name to put to it, rather than just saying "I don't feel well today because of ________________" Since then, when I've seen different doctors, they said different things according to my blood tests (which always turn up wierd....after I've taken prednisone, they look practically normal) BUT what I feel and what I am going through are NOT normal, and when I had to explain what I was feeling, I began going from head to toe: hair loss, foggy brain, nose/mouth sores, rash on face, extreme sensitivity to sun, pericarditis, pleurisy, IBS, extreme joint pain, and just a feeling of unwellness...like the flu before you get symptoms. since I already had the dx, they didn't argue anymore. You have to get REAL aggressive sometimes. YOU know your body better than THEY ever will. Fight for it!
    Nurse Ratchet needs to go. If you can at all afford to do so, go see a doctor outside your network and pay the price. Ask beforehand what they know/what their experience is with Lupus. Some doctors know TONS about it. That's the one you want to see, even if you pay for it out of your own pocket (I know it's not fair, but what is?) Tell him EVERYTHING. In my experience, once you get a positive dx, the other doctors respect it.
    God bless you and keep you and yours. You ARE a great mom...and the best way to continue to be one is to take care of their mother. Love, Kathy

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