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Thread: Update, RE-Diagnosed!

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    Unhappy Update, RE-Diagnosed!

    Ok so my husband and I went to my Rheumy on Monday and he says to me, you DON"T have Lupus!!! Im like WTF, we've been down this past before. In December he clearly said you're ANA test came back positive this is all I was waiting for to start treatment for LUPUS, since then everything has been ok except last month he told me I didn't have lupus, I was blank for a moment, really didn't know what to say. I mean geez who realy wants to have this horrible thing? Going backwards a little bit, that same day in Dec that he diagnosed me I went to see a female rheumy who does Lupus research, the first day she saw me she said who cares what we call it we have to treat it and put me on plaquenil, i love this female doctor but she's in town, I have to pay parking the copay and not to mention its a LONG wait to see her. The male rheumy I currently see its in my neighborhood and has evening hours and short wait time. So he's more convenient, which is what I told him when he told me why didn't I stay with the female doctor then! Anyway I scheduled another apt with the female dr and after waiting two hours to see her, she sits looks at my chart, and says to me IS HE CRAZY, WHY DOES HE SAY YOU DONT' HAVE IT WHEN CLEARLY YOU HAVE SLE. I mean it was sort of bitter sweet, I wanted someone to validate my symptoms and not make me seem crazy, on the other hand I want to wish this desease away. My husband was there with me, as he is really hoping all this is a big mistake. He asked her what made her call the diagnosis, the labs? She says its a combination of both, from the minute she heard that I had pleuritis that was almost enough to diagnose she said. She didn't want to count the criterias, she said she didn't care if I only had 3.5, which obviously there are so many more, she said I have SLE. She also told me don't wait another 6 months to see her again, she wants to see me in 6 weeks.

    How do I go about telling my first Rheumy I don't want to see him anymore, do I owe him that? He's really not terrible, and despite the fact that hes made me think Im crazy for the last two months, I like him and he's really thorough, I also think he does have my best interest at heart. Im just not comfortable trusting him with my life anymore.

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    Holy wow. So you're re-re-diagnosed then? That's complicated.
    Can't help you on the doctor part :/ I always just moved on to a new one when the old one wasn't working for me, I never really contacted them or told them. It's up to you (: But at the same time, you might want to tell him so he knows you're still alive, and also so he can maybe try to improve for other patients.
    I'm glad your female doctor is actually there for you though. I know you want to wish the disease away, but as long as you have the symptoms, having the name isn't going to hurt.

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    I work in a clinic. I would just call the office and tell his staff that you are seeing another doctor. If they require more info at that point, they will ask. This saves them the time and effort of calling you numerous times to find out why you have not made a follow up appt. And there are medlegalities involved with keeping a patient "on the books" as opposed to formally discharging them.

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    I'm happy that you've found a rheumy that's going to treat you based on sxs and labs, not just if you land directly in the criteria box. What good is a doctor going to be -no matter how convenient - if he's not willing to tx your sxs like the lady rheumy?

    When all is said and done, my rheumy is three hours away and she doesn't contract with any insurance companies. I only see her two or three times a year. She has telephone consults (no charge) and I sometimes have to wait, but she's worth it. I schedule an afternoon appt so I work in the morning and then drive down and see her. It makes for a long day, but it doesn't happen very often so I just plan for it. Her office is next door to the motility specialist so I try to schedule a twofer. It doesn't always work.

    As to the man rheumy, you owe him no explanations. If the new rheumy wants the records, she'll have you sign a release and send it to him.

    I hope you start feeling better soon.
    Last edited by BonusMom; 07-14-2011 at 08:01 AM.

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    Quote Originally Posted by chikititalinda View Post
    Im just not comfortable trusting him with my life anymore.
    if you go to a mechanic and he does not do his job properly, do you tell him when someone else has fixed it?
    there may be a reason he is easy to get to see.

    you have paid him money to change his mind... and not help fix you.

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    I agree with steve. You don't owe him a thing! He wasn't doing what he needed to do so you went out and found something else. He will probably figure it out you are going somewhere else when the new doc faxes over for your records. If he doesn't figure it out until you don't ever show up again then so be it! You owe him nothing!

    Ok, back to the diagnosed.. yay! I completely understand the bitter sweet comment. No one wants to be ill but we really want to know that we are not nuts! I am glad someone finally decided to pay attention

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    I travel 2.50 hours to see my rheumy, because she hears me and treats me. Stay away from people who do lousy work. You have to trust your rheumy, especially when the big stuff comes.

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    Stay away from him, since you are happy with our female rheumy.
    When I first saw my present rheumy, he had gotten all my medical records from my first theumy. The first thing he said was, " we already know that you have RA and Lupus, so we will not waste time to get your blood tested again, we all know that RA and Lupus are not curable." He just wanted to start treatment, to see what would help me.
    I think that is also important to you, that you get treatment.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Hey Linda,
    I agree with everyone else - stick with the female doc and don't even bother with the other one.
    I've been on the diagnosed-undiagnosed merry-go-round, too. I don't get why some rheumys are so hung up on blood test results and criteria without paying any attention to the person and the symptoms right in front of them.
    My first rheumy was like that. My second one was much like your new one. She started treating me and took good care of me. Unfortunately, I've moved and have another bad rheumy. Getting back to my good rheumy is the only good thing about moving back to Texas in a year.
    Good luck to you.
    Hugs,
    Marla

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    I call their office and tell the receptionists I wont be seeing that doctor anymore. Simple. They never argue or ask why, they probably get it often enough. Things change and not every doctor will suit every patient. It takes a long time to find that doctor that fits right with your personality, your illness and your beliefs. When you find one that fits hold onto them. Take the extra time and money to see the female rheumy, it could save your life!!! No matter what... once you have been 100% diagnosed with SLE, even if in a couple of years your symptoms clear up and your tests come back super dooper... you STILL have SLE... it just isnt active. Handing out diagnosis and taking it back is unprofessional. If they are uncertain, they should be honest and say "Well it looks like SLE, but we need to keep you monitored to give you a confirmed diagnosis." SIMPLE!

    Stick with your lady doc : ) I ALWAYS prefer lady docs anyway. My new rheumy will be a lady, I am looking forward to meeting her.

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