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Thread: Good Rheumie or Bad Rhumie? U be the judge

  1. #1
    Join Date
    Mar 2010
    sunny HOT phoenix in nice cool ac
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    Default Good Rheumie or Bad Rhumie? U be the judge

    Dx'd SLE Feb 2010. Rheumie is very nice, but doesn't like to talk "numbers". He speaks "layman" to me...his hopes for me are that the disease will be mild but it is an unpredictable disease.
    1. He CALLS me in earlier than my appointments are and scares the h out of me!
    2. He prescribed prednisone (temporarily until the plaquenil kicks in) but does NOT share my numbers with me. I know my lupus panel results (got a copy of that) but not inflammatory indicators in the tests. I believe he thinks of the labs as HIS territory, us little patient peasants need not worry our pretty heads over that kind of stuff!
    3. He likes to point out lupus is doing this and that...veinish pattern in my legs, malar rash, hair loss, etc.
    4. He seems to always want to know if I'm having sores in my mouth and nose. Of course I'm NOT having them at the same time as an appointment! He is not as delighted at the sores ON my mouth then in my mouth. Why is this? does he just have a mouth fettish? haha, maybe his other SLE patients have lots of mouth sores IN thier mouth and this is how he gages lupus activity!
    5. He thinks all joint and muscle aches and pains in lupus patients are fibromyalgia. I don't think so. Do you? Are they? Is this because he is "defending" his RA patients vehemently? Goodness...I didn't mean to step on any RA toes...My pain is NOT warm to the touch and does not match the fibro "points" on my body and isn't always on both sides. I've had peripheral neuropathy for about 16 yrs...I think I'd know the difference between what could be some MCTD pain, arthritis, fibro, All my labs tested positive and high (ANA's), double stranded - the highest) so he says let's just call this thing LUPUS and leave the rest out of it. Ok by me I guess. Is it?
    6. He only does my scripts for SLE meds. I had to go back on insulin during prednisone and he wouldn't dirty up his med pad w the script...that's what primaries r for I guess. Is this normal? He's the one who told me to go back on insulin for awhile!
    7. This is a biggie: If he doesn't mention I go to a nephrologist or hemotologist, even though I have chronic anemia (last 3 years) (creatnine is ok but don't know about c reative proteins) SHOULD I ASSUME THAT MY KIDNEYS AND BLOOD ARE OK?

    I'll have to ask that question next time. Oh yeah, that would be next week instead of my regular appointment in two weeks since he CALLED ME IN EARLY AGAIN.

    His nurse says he reviews all his patients records on a regular basis. My goodness! That's UNHEARD this possible? It is good, yes?

    Am I in good hands? My gut (besides killing me after putting food in it) tells me "Yep!" What do u experts think?

    Thanks to All, Julie

  2. #2
    Join Date
    Feb 2009
    Port O'Connor, Tx
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    I can't say if he is good or not. I just have one question. How many Lupus patients has he seen during his career? Remember there are only about 159,000 Lupus patients out of 300,000,000 people here in the U.S. My point is if he has only seen one or two then he doesn't have the expertise to figure you out.

    My rheumie really cares about my health and keeps doing more and more test. No treatment plan for Lupus that was diagnosed in Feb 09. Now I have cancer from the lack of keeping the Lupus suppressed.

    Sitting on the beach drinking lemonade.
    Fair wind and following seas.

  3. #3
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    May 2007
    Seaside, Ca.
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    Hey David,
    I don't want to hijack this thread, but what did the VA find out about the cancer?

  4. #4
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    Apr 2009
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    Julie, I'm no expert but...he sounds okay. In my opinion, more time will tell.

    Sores in the mouth and nose are commonly found in lupus patients and I suppose he's just checking the activity. Sores on the outside of the mouth are probably just viral like cold sores, like I get, but i'd like to blame it on lupus, however doctors won't let me.

    If he thinks the labs are his territory only, well that's a negative. You should be as fully informed as you want to be. A good doctor wants you on the team and that means you are fully informed of everything. I refuse to visit a doctor that will not let me be informed. I'd argue for that right and if he says no, I'd find another doctor...that's just my opinion though based on my own preferences. I can't stand doctors that put me in the dark about anything at all and think they are the only important component in my healing.

    I don't agree with his thinking that all joint and muscle pain are due to fibro. I asked my rheumy if she thinks I have fibro and she said no, it's lupus attacking and putting me in pain. It's not always fibro, although it can accompany lupus. But no, he's wrong. Maybe he's simply using the word, fibromyalgia, because he believes fibro is not an isolated, separate illness, but a description of symptoms like some docs believe. Like tonsillitis is merely used to describe tonsils that are inflamed. There are still many docs that refuse to recognize fibro for what it is...that it doesn't fit under the disease category. So I wonder if he's of that same opinion and using it to describe symptoms we suffer.

    Don'tcha' just love docs that don't want to help save you time and money and just write you a script for something you both know you already need??? BUT he may have a point about that one. Insulin is some serious medication and I think you also need to be seeing a doctor that specializes in patients needing it. If it were me, I would.

    I wouldn't get too concerned about your kidneys based on being referred to a could be nothing, and he's sending you to an area of expertise just to be on the safe side. A hematologist would be more helpful with insulin needs right? I don't know. I'm asking. I saw one a few times and she was able to help find a couple of missing pieces to the puzzle that helped my rheumy with my dx.

    If he truly does review all his patient's records on a regular basis, i'd call that good and it is possible if a doctor is committed to his/her job of helping their patients. But how a doctor reviews and treats their patients are two different things all together. There are a lot of bad doctors that claim to review all those records too.

    Sometimes it takes quite some time to determine if this is the right doctor for you and sometimes it doesn't take very long at all. No one is really an expert on that I think because we are all so different and have different needs, and you need to decide if he/she is the right doctor for you. And you usually know after some time has passed. I've seen four rheumys and when I met the fourth rheumy I had gained enough insight to know she was the right one for me right off the bat and she still is. Like David pointed out, you need to see a doc that has dealt with lupus a lot. Someone that knows it backwards and forwards and cares about the quality of your life. I've made phone calls and asked right out and was given such vague answers before. The only way I could gauge it was by visiting and paying money out I wish I could have back.

    Keep us posted on your appt okay?

    David...I didn't know you're battling cancer! I'm so sorry!! ((((Hugs)))

  5. #5
    Join Date
    Dec 2008
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    hi julie,

    leslie, marla and david have all give you very valuable input, and i can't add to anything that they said.

    the important thing about your dr., is that you have confidence in him/her. Sounds like he might be the fatherly type, but you need a team member. You and your dr. need to share pertinent information because you have the personal experience with what is happening to your body, and he has the education necessary to put together the pieces.

    best of luck to you, and so glad that you found us.

    share a smile today

  6. #6
    Join Date
    Feb 2008
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    Hi Julie,

    I can't add too much. But I will say that in comparison to some of the totally incompetent rheumo's I've encountered personally, and read about here, yours does not sound too bad at all. Like others said though, you need to be comfortable with him.


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