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Thread: Family pushing for 2nd opinoin?

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    Default Family pushing for 2nd opinoin?

    Hi there. Thinking about getting a 2nd opinion. Not really because I want one, but family and friends are really insisting that I should go to the UW in Madison with the best DRs around. I just got a diagnosis, (Lupus) I'm on Plaquenil, Imuran, and prednisone. It's been about 8-9 weeks and I'm still getting rashes, I look burnt all over my skin, I'm run down and have pain. I explained that this takes time but people are worried for me. I can appreciate that. Can anyone in that area recommend a good Dr? I'm a little concerned getting a second opinion could cause an issue with my Dr now. Will he think I don't trust his information? Will it effect my care with him?

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    My family and friends keep pushing me to go to the Mayo Clinic in Rochester,MN. I like and trust my Dr a lot. He is amazing and he interned at the Mayo and sends most of my blood work there. I know they are concerned and want the best for me. They want me to be diagnosised correctly and sooner rather than later. But it is my decision. If I thought my Rhuemy was not doing his job or listening to me or whatever I would do something different. I am comfortable with his treatment and will be comfortable with his diagnosis as well. You will have to be comfortable with whatever decision you make regardless of what your family, friends, or doctor think. It needs to be your decision.

    Have you asked you Dr. how long before you should see results from your treatments? Should you be trying different treatments? Have you talked with him about new or worsening symptoms? Is the redness a side effect or reaction from sun exposure? You should have these conversations with your Dr. Have you brought loved ones to your appointments so they can ask questions and be informed?

    Make sure you have given it enough consideration. My family loves me, but they don't know what I deal with and they will be the first to pipe in with inadequate advice when they don't want to even go to the appointment with me. So I will make my own choices...thank you very much!

    With that said...if they run the same tests as your Dr. did, do you think they will find something different? Do you think something else is wrong instead of Lupus? Do you doubt your Dx?

    "I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel." -Maya Angelou

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    My husband has come to all the app with me. I'm having an issue remembering all the details so he thought it'd be better to tag along. My husband initially thought I had a carcinoid tumor somewhere. I think he was surprised that I was diagnosis with lupus actually. I think people are suggesting the UW because they are known as one of the best around. My dr seems very knowledgable and has run tons of test. When the rash got worse he got me right in, and put me on Imuran and did more test. I think people, myself included, are concerned with how fast and hard this flare has impacted my life. And everyone thought I'd be better by now. I'm imagine its got to be hard watch someone change so much. my life use to be helping run our business, raise or kids, run with my friends, now I barley be to go to the store. This happened all in a matter of weeks. They suspect this flare hit due to a very bad sinus infection.. It actually damaged bone in my upper sinus cavity.. During my treatment for the infection,my rash biopsy came back as lupus, so did my labs. And I've just never really gotten better.
    Thank you for replying and for the good questions to ask the dr.

    I appreciate you taking the time to reply
    People Inspire you or drain you, pick them wisely







    lupus: plaquinil, Imuran, prednisone, vitamin D

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    It sounds like he is really proactive on the parts of his patients and is concerned and listening to you.I would say that your husband is in his own way grieving because if he has gone to all the appts and seen/heard all the issues you are having now and can have with this illness he is in a way hoping that it is a "mis diagnosis" and that you can get remaining issues cleared up and go back to being just you.

    To me that is a normal response.A lot of people seek second opinions trying to undo the diagnosis just as others seek 2,3 and 4 looking for one.It is on your chart and if you like the dr,feels he listens and is quick to act and proactive in your care I wouldn't want to go thru all the hoops again.I personally would try to stick with one and get my health under control.It sounds like that is what your dr is working toward.

    It sounds also like your husband is likely struggling with the realization that this is going to be a lifetime of maintenance and health issue and is just hoping the dr is wrong.

    I wish you the best and your husband.

    Be well. And Welcome if I haven't said it in your intro thread I can't remember so if I did already welcome again.
    Last edited by ItsLupus2007; 03-02-2013 at 05:23 PM.
    SLE w/Sjogrens Overlap and Raynaud's diagnosed in 2007.Fibro in 2009.

    The Early Bird May Get The Worm But the Second Mouse Gets The Cheese.

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    In my opinion, there's nothing wrong with getting a 2nd opinion. I'd discuss it with your doc prior to going, and explain what and why you're doing it. Your current doc might be the kind that would co-operate and send his results to the other doc for review. Then again, he might get upset and question your authority in the situation... which you don't want to have happen, but at least you'd know what kind of doc you have now. Anyway, again, it's your body, your blood work results, etc., and the doctor is in your employ. Do respect him/her though, and let them in on your plan. That way, your family is satisfied. You might have to check your insurance though, and make sure you're covered where you're going...

    With that said, I've been through about 6 rheumies over the years (various reasons). I've been diagnosed with several AI diseases, and un-diagnosed from several, then re-diagnosed, sometimes with more diseases, etc., so 2nd opinions don't always help, and may or may not be accurate. You mileage may vary...
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    I am really glad you have such wonderful support from your husband. After all you are both in this together and it affects the whole family. It also sounds like you have a really good doctor on your side as well. Also remember that the first step in grieving your old life and accepting your new one is denial. I wish you well with whatever choice you make and please keep us informed.

    "I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel." -Maya Angelou

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    This is where you need to take charge of your health, you said that you dont really want a second opinion but your family do, well if you are happy with your specialist and it sounds like you have a good one, then you need to stand your ground and say 'I know you are only thinking of me but I am happy with my specialist and confident in his opinion.

    Many of us struggle to get a decent specialist and yours sounds proactive and they listen to you - that is priceless.

    So if you do get a second opinion it should only be because you want one - do it for yourself and yourself only, not for your family.

    xxxx

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    My son goes to the UW Madison, but he goes to the American Family Childrens hospital there. LOVE his dr's!!! Can't help you with the doctors in the main hospital, but if they're anything like the ones he deals with in the children's hospital, you won't be sorry!!! Good luck!!!

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    Thank you for the replies and feedback. I decided to tell my family I'm just plain tired of going to the doctor. It's actually the truth. I don't want to start over at this point. I've read many of the post on here and I'm not really all that different, or is the medications they prescribed way out of line. So, I'm suggesting we give the medications a few more weeks to kick in and reevaluate after that. My husband has been amazingly supportive. I know this has been hard on him too. But for myself, I just need to take a step back and start focusing on getting better. Thanks again.
    People Inspire you or drain you, pick them wisely







    lupus: plaquinil, Imuran, prednisone, vitamin D

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