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Sangye
02-25-2011, 03:17 AM
Consumer Reports magazine did a great article with this title this month. I accessed it online and wanted to summarize the main points.

1) Form a long-term relationship with your primary care doc.

2) Be respectful and courteous to your docs.
70% said that had gone downhill since they started practicing. (I wonder if they've considered how shorter visit times and "One Problem Per Visit" limits are impacting that.)

3) Follow your doc's instructions (eg meds, home care)

4) Pain is tough to treat.
It's very difficult for doctors to be unable to eradicate a patient's pain completely, and it troubles them.

5) Keep track yourself.
"89% said that keeping an informal log of treatments, drugs, changes in condition, notes from previous doctor visits, and tests and procedures could be helpful."
"80% thought taking a friend or relative to your office visit could be beneficial"

6) Be cautious about online research
"Almost half of physicians we surveyed said online research helps very little or not at all, and just 8% thought it was very helpful" The article stressed the importance of using credible sources online.

7) Doctors are pressed for time.
"The sheer volume of insurance paperwork was No. 1 on the list of things that interfere with their ability to provide optimal care. Next was financial pressures that may force the majority of primary-care providers in our survey to work more than 50 hours a week seeing more than 100 patients."
The article listed ways you can use the time more efficiently, like bringing a list of questions and symptoms. They also said not to settle for a doc whose rushing impacts the quality of care you're getting.

8) They talk to drug salespeople and they don't want you to know about their malpractice cases.
"The majority said that pharmaceutical company representatives contacted them more than 10 times a month. 36% were contacted more than 20 times a month. On average doctors said they spend a few hours a week dealing with pharmaceutical salespeople."
"47% said information about whether the physician has been involved in a malpractice lawsuit was 'of little value.' Only 17% said that information about disciplinary actions by medical licensing boards was 'very valuable.' "

9) Find Dr Right
In addition to stuff we know, there were 2 suggestions that we don't usually hear:
"Use your first appointment as an audition. If you have a specific health condition, ask how much experience that doctor has with it. And be open about other concerns you have."
"Break up if it isn't working."

Jack
02-25-2011, 03:38 AM
They have a dubious opinion of on-line information because so much of it is indeed questionable, but I like to think that our site is a little different. For starters, there is so little knowledge of our condition amongst the medical profession that there is a need for an alternative source of information. Also, this site seems to be quite accurate in its reporting and it is very rare that I feel the need to correct any information given. Probably because most members limit their posting to personal experience.

Sangye
02-25-2011, 03:44 AM
I agree, Jack. I think we do a great job in this group of keeping the info accurate and sharing the recommendations of the Wegs specialists.

02-25-2011, 04:01 AM
For starters, there is so little knowledge of our condition amongst the medical profession that there is a need for an alternative source of information. Also, this site seems to be quite accurate in its reporting and it is very rare that I feel the need to correct any information given. Probably because most members limit their posting to personal experience.

I totally agree.
It's very hard to find information on WG that suits one's specific need. WG is rare, and then, each case of WG is different. Being able to read the personal stories and struggle for proper treatment or diagnose from so many people here is of tremendous importance.

To me it is, anyway.
Long live the internet.:wink1:

freakyschizogirl
02-25-2011, 05:51 AM
Without you guys i'd know nothing!

There's no better advice than someone going through the same experience as yourself.

Daggar
02-25-2011, 06:55 AM
I get the feeling that some doctors -- not all -- take it as an "insult" that the patient is seeking additional information beyond what they are willing or able to give. Most do understand that their time is restricted and recommend that you educate yourself about your condition and there's no better way than to hear from others suffering from the same illness. Surely there are what they call "quack" sites out there that provide misinformation in order to sell a product or service which sometimes undermines the medical profession, however, I'd hope most doctors would consider us intelligent enough to separate those from a legit site. This site is invaluable for WG patients and their families!!!!

NanTom
02-25-2011, 08:50 AM
Excellent advice! Once the "very weird symptoms" started happening to hubbie, we wrote everything on a calendar for the two months (just because we were puzzled the symptoms all seemed so unrelated). Once his foot went numb and was hospitalized, he was diagnosed in a week. They said that calendar helped tremendously!
Hubbie had a nosebleed this AM. Only you folks would understand how that "feels." Thank goodness for this site. What a wonderful gift! That went on our newest Weggie calendar!