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 patient’s job is to report symptoms, ask questions, follow instructions and express their needs. The doctor’s job is to make sense of the symptoms and treat accordingly, answer questions, give clear instructions and respond to the patient’s needs.

2) The history is the single most important part leading to a proper diagnosis. It’s also where the majority of medical mistakes occur—important 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 won’t have to memorize as much, and you can review the information several times.

5) You’re not wasting the doctor’s 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) What’s the name? (write it down)

2) What caused it?

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

4) What’s 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?

Great post Sangye, thank you!

Gonna make it a 'sticky'.

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!

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Originally Posted by Doug

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

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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?" :D

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Originally Posted by Sangye

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?" :D

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Yes, I know how you feel. I always lose track of the tentacle I started at and can never get an accurate count done.

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

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

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.

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.

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

I'm glad you're doing that, Tom. I did it for several years and then stopped the past few years, because I felt I had developed a good grip on my background Wegs symptoms/ symptoms from other complications that are always there, and anything new cropping up. For the first several years those things threw me for a loop on a regular basis. Because I didn't get into remission for several years and because my remission is always pretty tenuous, I just couldn't tell what needed to be reported and what was gonna be normal for me. Keep logging that info for as long as it helps you and your doctors. :thumbup:

What a great idea, maybe if I use this I won't confuse myself or the Docs. It would be so good to walk away from apt one time with a clear idea of what's really going on. To both of you thanks for sharing.

Docs will help your Docs! :biggrin1:

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Originally Posted by Green Grass & High Tides

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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Love the idea and spreadsheet. Thanks for sharing! :thumbsup:

Here's some advice from Cleveland Clinic about patients' expectations of their doctors...

https://health.clevelandclinic.org/2...m-your-doctor/

Could you by any chance explain what the 3 different color sections and the abbreviations are on that wonderful spreadsheet? I can figure some of them out, but since I'm a newbie not sure if some of those columns are abbreviations for medications. By the way, I think that spreadsheet is worthy of a "sticky"! I came back looking for it after browsing the site earlier.

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Originally Posted by PANDASmomx2

Could you by any chance explain what the 3 different color sections and the abbreviations are on that wonderful spreadsheet? I can figure some of them out, but since I'm a newbie not sure if some of those columns are abbreviations for medications. By the way, I think that spreadsheet is worthy of a "sticky"! I came back looking for it after browsing the site earlier.

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Hi PANDASmomx2- Sure, thx, glad if it helps. It a starting place. Anything can be added. I just like it because I can see the whole month on one page. If I highlight just the wegs activity over a level 5 then it shows a clear picture to the Doctor of where the disease activity actually is.

BLACK: The first section is black columns, those were some of the meds at them time. They change. Currently its' MTX, Pred, Folic Acid, Flonase, Kytril or Zofran (nausea), Vitamin B complex, D Complex and Green (I drink spirulina and juice which helps me)

RED: The second section is RED which are for activities -Sleep, Exercise, Mood, Energy, Negative / Positive Level; all on a scale of 1-10, except exercise which I track with the minutes of cardio / anabolic (weights, muscle exercises).

BLUE: Wegeners symptoms. These are the most pressing issues for me to track at that time. The biggies for me then were GI, Nausea, Neuritis, Lumbosacral, Fatigue, Weakness, Eye, Ear, Lung, Sinus.

SYMPTOM NOTES: Any additional issues or siginificant things for the doc.

ALP: Was for alprazolam which is xanax, which I was afraid of taking. Eventually had no choice since it counteracts some brain issues I have from Prednisone. So I would put any addictive medicine at this spot. This makes it easy for myself and others to easily track it. Since I have a Adverse Glucocorticoid Reaction to Prednisone and not the ordinary energy aggressiveness, it have been charting all of those medication on that right side of the page. This is because I see a number of other specialists for those. I want my Rheumotologist to see it and be aware but I also needed an easy way to separate the wegs symptoms from the medication reaction.

I've done this for two years and it has helped immensely. Especially since I suffer from a fatal case of "wishful thinking". I often go into the doctors office and will remember the past month or 2 months as "not so bad, I did pretty good." Then we will look at my chart and see that the Lungs had a flare, the eyes had wegs activity, the neuritis jumped and affected the lumbosacral pain and the GI had 3 cases of significant bleeding.
That's a big difference.

The biggest help it has given me is to see that Rituxan didn't work. Cytoxan didn't work. I'm limited to 2 activities a day 1 healthy, 1 family. If I do more I get sick. The chart clearly shows this every time. So I'm accepting that. Now. And all its implications. If I didn't see it in my own handwriting I would never believe it.

My wegs life boils down this:

NUTRITION
RESTORATIVE SLEEP
RAISE ANABOLISM
REDUCE ALL INT / EXT STRESSORS

Best wishes. Would love to hear how you are?
Tom

GREAT post...thank you so much for sharing. This helps me with what to ask for my next appointment

I went to the chart, but I cannot download it. Thanks anyway, Tom.