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Thread: Tips for Dealing with Doctors

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    Default Tips for Dealing with Doctors

    These are some tips I used to give my patients to help them deal with all their doctors. I hope they help!

    General Notes
    1) The patientís job is to report symptoms, ask questions, follow instructions and express their needs. The doctorís job is to make sense of the symptoms and treat accordingly, answer questions, give clear instructions and respond to the patientís needs.

    2) The history is the single most important part leading to a proper diagnosis. Itís also where the majority of medical mistakes occuróimportant symptoms are ignored, questions are not asked, etc.... Be actively involved when the doctor is taking your history. It's hard to get that chance back later. If you don't feel they're listening, reiterate it. If a symptom is very concerning to you, tell them; don't assume they'll take it seriously otherwise.

    3) Regulary get copies of your records. The unbelievable errors you will find get copied into future records. That can lead to a misdiagnosis, or can cause a doctor to begin with the wrong impression about you.

    4) Bring a small voice recorder to each doctor appointment or when the doctor sees you in the hospital. You wonít have to memorize as much, and you can review the information several times.

    5) Youíre not wasting the doctorís time with your questions. You are quite likely saving your life.

    Questions to ask before doing diagnostic tests :
    1) What test do you want to order? (write it down)

    2) How will the result change your decision-making? (A doctor should never, ever order a diagnostic test unless the results will change their actions.)

    3) How is the test done? What are the side-effects and risks? How do the benefits outweigh the risks?

    4) Are there less-invasive alternatives?

    Questions to ask for any diagnosis :
    1) Whatís the name? (write it down)

    2) What caused it?

    3) Whatís the treatment? What are the risks and side effects? Are there alternatives?

    4) Whatís the prognosis?

    5) How certain are you that I have it? What else could it be?

    6) What is your experience with treating this? (uncomfortable to ask, but necessary)

    7) Where can I find more information about it?

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    Great post Sangye, thank you!

    Gonna make it a 'sticky'.
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  3. #3
    Doug Guest

    Default Dealing with doctors

    I can agree more with this post! I would like to add one more recommendation, though. Your doctor (or doctors) see you for such a brief time each day you are hospitalized, even less once you are turned loose. Especially in hospital, add nursing staff to your list of helpers. They have more (if not a lot) time to hear what's going on with you. Think of them as your best ally when you feel your doctor or doctors seem to be moving in the wrong direction, for example, or you are. Talking "doctor" isn't easy at first. You may not feel you are getting through to them, but your nurse generally can help you formulate your questions. I had some problems with medication for pain, making my doctors feel I was delusional at one point in my hospitalization. (Could it have been my "belief" that all Christian were essentially Lurtheran or that all languages were related to Dutch and that I could speak Dutch, a language that I never studied but is similar to German, which I have? Haw! I'm sure these may have contributed to the doctors' delusions about me!) It was nursing staff that told me doctors felt I needed a visit to the mental ward and warned me. The warning helped me pull my "normal" act together, which became much easier to maintain once my medications were adjusted at a later date. I no longer "believe" the Lutheran or Dutch things, which makes for a generally happier life!
    Last edited by Doug; 06-30-2009 at 07:37 AM.

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    Quote Originally Posted by Doug View Post
    Could it have been my "belief" that all Christian were essentially Lutheran or that all languages were related to Dutch and that I could speak Dutch
    That is absolutely hysterical. One time I tried Ambien for insomnia. In the middle of the night, I found myself sitting up in bed counting my tentacles. It seemed absolutely reasonable until I remembered it the next morning. When I told one of my docs (who had a great sense of humor), she paused and asked, "So...how many did you have?"

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    Quote Originally Posted by Sangye View Post
    That is absolutely hysterical. One time I tried Ambien for insomnia. In the middle of the night, I found myself sitting up in bed counting my tentacles. It seemed absolutely reasonable until I remembered it the next morning. When I told one of my docs (who had a great sense of humor), she paused and asked, "So...how many did you have?"
    Yes, I know how you feel. I always lose track of the tentacle I started at and can never get an accurate count done.
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    Currently but not permanetly residing in Canberra, Australia.

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    Good stuff: I would like to add:

    Prepare for the visit:
    Take a list of active medications
    Write down what you want to talk about or need to report

    When you are there:
    Don't be in a rush, slow down and activily particpate

    After stuff:
    Make notes of what occured
    Attempt to set up out of appointment communications with the docs. I send mine an a weekly e-mail of my sypmtoms.

    David

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    Here's an article from Cleveland Clinic about how to be a better patient: The 9 Best Ways to Be a Better Patient ? Health Hub from Cleveland Clinic
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Thank you Sangye. This is great to read. Since 1998 I have struggled to emphasize the importance of my symptoms to doctors.

    The one thing I realize now is that doctor MOTIVATION is mandatory with Wegs. It's too serious a disease to downplay or cater to egos. If I have a concern I must motivate that doctor to pursue evidence. If they refuse or cop attitude (often) then Motivate a different doc. Nothing motivates a doctor like an irate family. Much more than an emotional patient. This thing is tough to pin down scientifically. I think for a doc it seems daunting and I seem emotional. So they move on.

    There is a particular feeling that is associated with a wegeners attack for me. My sense of that feeling has always been right for 16 years. It's the same, yet very often discounted by doctors and testing. When I started they told me the eye pain wasn't from Wegeners. Now it's a listed wegeners symptom! Ear problems were the same deal. Maybe my docs were just not good but they assured me I had untreated wegeners for 2 years and I was very likely dying. I survived on Pred and MTX but no remission. I've been telling them for 14 years that flares of excruciating nerve pain has been wegeners. For 14 years they told me no it's not. Now, after no treatment (except disability, non inflammatory diet and Zen) they see it in the brain. After a wegs intracranial hemorrhage! Glad I'm alive but once wegs picks a target organ it goes after it relentlessly, at least for me, so, my hope is that Rituxan (not an option in 2000) and 3000 mg of Solu Medrol with 60mg prednisone is going to stop it. If I had read Sangye's advice sooner I might be able to see and walk normally today. Thanks again.

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    I've learned the same lessons as you. Don't stay with an uninterested doctor, or one who chalks everything up to emotions or prednisone side effects. I'm so sorry the Wegs has become active in your brain. I hope the rtx convinces it to go to sleep for a good long time. For many of us who don't stay in remission without frequent treatments, they're using a new protocol of a single, half-dose rtx treatment every 4-6 months on an ongoing basis.

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    DAILY CHARTING: It's been a bit over a year now since my last Wegeners flare, Brain, Lungs, eyes the whole deal... still battling... But one thing I have constantly come back to over this past year and that I still use every day is what was started on this thread. I love sangy's suggestions and eventually created a Daily Chart 1-10 Severity Scale For Wegeners. I list the 10 main symptoms and rate them in the AM and PM using the highest number that particular symptom got to each day. So if in the morning my eyes feel fine (1 or 2 severity) but at 3pm they are in pain (6-8 severity) but then I take prednisone and by 7pm they are at a 3-4 severity, my chart will look like this for that box:

    eyes:
    1,8

    So, now I now on that day wegs was active and how severe it got and what med i took and what worked....

    I use a spreadsheet and all the symptoms are on the top and 31 days run down the left hand side. I also track Sleep, Nutrition, Stressors, and Anabolism Raising Actions since these are part of my tx too.

    Now that I have a full year, 12 pages. I take it to the Doctor appointments. You should see their eyes pop! They ask a question and rather than go by my horrid / fatally optimistic memory, I pull out the chart! It's been very, very helpful to correlate medications, activity, stressors, restorative sleep and nutrition with Wegeners Disease Activity. Especially since I also have Glucocorticoid Adverse Reaction to Prednisone, which causes like 30 other symptoms. It was impossible to track and chart two different diseases. Now I just track the wegeners and such.

    If anyone wants a copy of my Google Docs spreadsheet I made a copy here: https://docs.google.com/spreadsheets...it?usp=sharing

    Not sure if it'll help but thought I'd pass it on.

    Best wishes to all,
    Tom

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