Author Topic: Need some help dealing with doctor  (Read 9796 times)

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bansidhe

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Need some help dealing with doctor
« on: July 25, 2012, 02:10:49 PM »
I'll put the disclaimer right up front: No medical advice, please!  :)

[BG] I've been dealing with a mysterious, chronic, painful medical condition for over seven months now. Numerous tests have ruled out anything obvious, meaning that the culprit is likely to be something like fibromyalgia or interstitial cystitis (or both) - one of those annoying "invisible" maladies.

I fired my original primary care doctor because he was inexcusably rude to me on more than one occasion. I've seen his replacement, New Doctor, twice.[/BG]

The first time I saw New Doctor, he ordered the last of the screening tests people in my situation generally go through. They were negative.

The second time I saw New Doctor, I asked where I go from here in my efforts to find out what this is and treat it. He side-stepped that question, instead focusing on the fact that my disk had herniated (I was dumb enough to mention it), then turning his attention to a pimple. A pimple! When I pressed further, he said we'd talk about the mystery illness when I come in for a recheck in three weeks.

I have gotten the "come back in x number of weeks" response from a number of specialists I was referred to. When I come in, they seem terribly surprised that there is still a problem, since the tests were negative, and I wind up being routed back to my primary care doctor.

I have a nasty feeling New Doctor is going to use the avoidance route (again) when I go in for my recheck. It's been seven months and I want to focus on this problem and get some answers and get on with my life. This has been beyond frustrating and I'm about ready to throw a fit.

Any suggestions for getting him to understand that this illness is having a major negative impact on my life and I want it to be addressed? Without throwing a fit, I mean? Saying "This illness is having a major negative impact on my life and I want it to be addressed" seems to have no effect.



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Wulfie

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Re: Need some help dealing with doctor
« Reply #1 on: July 25, 2012, 02:18:41 PM »
Does he work with a large practice ?  Some practices have a patient advocate for just this kind of problem.

If they don't have one, see if your insurance company has one that you can contact.

cicero

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Re: Need some help dealing with doctor
« Reply #2 on: July 25, 2012, 02:25:23 PM »
first - write everything down on index cards. your whole history in bullet points. then go in and say to him:

"New Doctor. Last time i was here, you discussed A and B. I would like to go over LongTerm Problem now. In the past seven I have had symptoms E, F, G, and tests E1 F1 and 2 and G3 and 4. all came back negative. we need to discuss where we go from here as I am still having symptoms E, F and G".

New Doctor: well, i see that you have this pimple and ...

"Doctor, I would like to deal with Long Term Problem - it is very frustrating to me that I am in pain and do not have a handle on this. We need to discuss where we go from here - are there more tests? what about medication"

new doctor: yes, but this pimple is bothering me...

"doctor, We need to discuss Long Term Problem" lather rinse repeat.

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rashea

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Re: Need some help dealing with doctor
« Reply #3 on: July 25, 2012, 02:26:17 PM »
I think you say, "Doctor, I want you to be honest with me. I want to address this, and I know it's possible that we may never be able to pin it down. What are your thoughts at this point?"

Then, request your medical records if you don't get answers. It's possible someone is putting it down to psych issues.  :-\
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JoyinVirginia

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Re: Need some help dealing with doctor
« Reply #4 on: July 25, 2012, 02:34:12 PM »
I agree, write down on card test A done in march, negative. Test B done in April negative, and so on. Then write what next? Symptoms 1,2,3 are still happening, and list frequency and intensity of symptoms. What effects they have on your daily function. And do address if he thinks you should have psych eval, get it out there.

WillyNilly

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Re: Need some help dealing with doctor
« Reply #5 on: July 25, 2012, 02:55:25 PM »
You need a Dr who will listen to you.  First step I think is make sure you have enough time.  If necessary ask for a double appointment.  Then as others suggested insist your problem is discussed.  Its possible - although perhaps unlikely - the focus on something like a  pimple is because he thinks its telling symptom of the bigger picture (some heart issues can cause stomach cramping for example - the body can weird sometimes), but even if that is why he's focusing on it, he should communicate that to you.

Basically you need to push your issue so its all that is being heard.  And if that doesn't work, find another Dr who does.  You might want to look into Drs who also specialize in alternative testing and treatment methods.  I sent you a more in depth PM about that.

bansidhe

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Re: Need some help dealing with doctor
« Reply #6 on: July 25, 2012, 03:58:43 PM »
Good ideas - thanks!

I like the idea of writing things down. That makes it seem more organized and less emotional - plus New Doctor did come into this kind of in the middle of the game.

New Doctor is the sole doctor at his practice so sadly, no patient advocate.

If he starts pushing a psych eval, I'm out of there.
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O'Dell

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Re: Need some help dealing with doctor
« Reply #7 on: July 25, 2012, 04:23:58 PM »
Good ideas - thanks!

I like the idea of writing things down. That makes it seem more organized and less emotional - plus New Doctor did come into this kind of in the middle of the game.

New Doctor is the sole doctor at his practice so sadly, no patient advocate.

If he starts pushing a psych eval, I'm out of there.

I'd fire him if I were you. I have a one strike policy with doctors because I've been burned too many times. I even had a doctor pull this sort of stuff when the original health concern I had wasn't a mysterious "invisible" hard to treat malady. It was something fairly easy to diagnose with a couple of blood tests. She diagnosed it even and then totally dropped the ball when I expected her to...you know...gasp...treat it! (If I get a few visits in I will drop this to a 2 strike policy or even 3 strike policy.)

If you really really want or have to stick with this Dr., I suggest that you do some internet research and start questioning him with liberal insertions of "When I looked online it said..." Or don't do research and just make stuff up and do the same. Saying things like that has irritated doctors enough that they launch into lectures and/or engage in a real conversation with me.

But your best bet is to keep shopping around. If "This illness is having a major negative impact on my life and I want it to be addressed" has no effect, then there isn't a lot of hope.
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dawbs

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Re: Need some help dealing with doctor
« Reply #8 on: July 25, 2012, 04:26:49 PM »
I will say, if he suggests psych eval, that's not necessarily a firing offense--depending on WHY he's suggesting it.  If he thinks the negative impact is leading to upset, that's a good reason.  If he thinks seeing someone about the stress, etc, could help, that's good too.

But that shouldn't be his 'answer' to you.

JenJay

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Re: Need some help dealing with doctor
« Reply #9 on: July 25, 2012, 04:44:43 PM »
Is there a specialist who might be able to help, even if you start out with someone really general like pain management? I'd ask for a referral. I once had a doctor tell me "I'm not familiar with your condition, but my friend is. I asked him about the medication you requested (which my own research indicated was vital) and he said the risks don't outweigh the benefit, so I'm not going to prescribe it for you." The end. Oh, did I mention my odds of carrying a pregnancy to term without this medication were slim? And he's denying me this because his friend who's never seen me said so? Unacceptable.

This was at an HMO and I didn't know what to do. I ended up on a nurse's advice line, crying, and she said "You know, sometimes the doctors are more concerned with the liability of a wrong diagnosis than taking a chance on the right one. I'm going to send him a memo and let him know that you're requesting either a prescription or a referral to Specialist." I had a referral within hours. He didn't want to deal with me and my oddball situation. Good riddance!

On the flip side, when I left that HMO years later and met our first family doc he was all excited about my oddball diagnosis because, as he put it, "I love any opportunity to learn something new!" with a big smile, as he took notes so he could research my condition later that evening. I miss his practice!

I'd give New Doc one more chance and see how it goes. If he doesn't seem knowledgeable or interested in becoming so I'd say "I can tell this isn't your area of expertise and I appreciate that you don't want to risk missiagnosing me. What kind of specialist should I see, and can you refer me directly or am I supposed to arrange that through my insurance company?"

TurtleDove

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Re: Need some help dealing with doctor
« Reply #10 on: July 25, 2012, 04:52:19 PM »
I wouldn't think a psych eval for an invisible malady is out of line since all the physical tests are negative, but consider finding a doctor you know treats fibromyalgia or interstitial cystitis.   Or consider alternative medicine.  My understanding is that the "invisible maladies" are difficult to treat because there is nothing physical to treat.  The doctors cannot treat something that has no physical origin, according to the testing.

Twik

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Re: Need some help dealing with doctor
« Reply #11 on: July 25, 2012, 05:12:50 PM »
I wouldn't think a psych eval for an invisible malady is out of line since all the physical tests are negative, but consider finding a doctor you know treats fibromyalgia or interstitial cystitis.   Or consider alternative medicine.  My understanding is that the "invisible maladies" are difficult to treat because there is nothing physical to treat.  The doctors cannot treat something that has no physical origin, according to the testing.

There are lots of illnesses that are not the "usual suspects". It's a well-known phenomenon that some doctors don't want to roll up their sleeves and start looking beyond those suspects - if they can't solve it in a few visits, they shrug that it's "all in the patient's head". However, there usually *is* "something physical to treat". They just have to find it.
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rashea

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Re: Need some help dealing with doctor
« Reply #12 on: July 25, 2012, 05:20:23 PM »
I wouldn't think a psych eval for an invisible malady is out of line since all the physical tests are negative, but consider finding a doctor you know treats fibromyalgia or interstitial cystitis.   Or consider alternative medicine.  My understanding is that the "invisible maladies" are difficult to treat because there is nothing physical to treat.  The doctors cannot treat something that has no physical origin, according to the testing.

Not really. Once someone has been in pain long enough, there is almost always psychological consequences, which makes it hard to tell which caused which.

Also, it's amazing how many disorders there are that they can't test for. The best indicator of my condition, is that narcotics don't work. But, that's also an indicator that someone is drug seeking. It's not that there isn't something physical to treat, it's that we don't have tests that can register many physical problems.

Fibro is a great example. We have all sorts of drugs and treatments that can help. But we don't really understand the disease, and there is no test. It's a rule out diagnosis. Which just means that they've ruled out everything else.

And a doctor suggesting that a psych eval should be done in general, especially if they note that anyone dealing with this will have psych issues involved eventually (really, the numbers are staggering). But, if they are dismissing it as all in the OP's head without even doing an eval, that's just wrong. Reading the medical records can be really interesting. I found one doctor who decided it was all in my head, but didn't tell me that. Yeah, well, it took 14 years, but I finally found a treatment option that works for me.
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magician5

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Re: Need some help dealing with doctor
« Reply #13 on: July 25, 2012, 05:32:34 PM »
Have you been going to a single type of specialist?

So often the diagnosis (or lack of one) depends, more than anything else, on whose office you walk into.

Example: My younger son wasted half away one summer. Blood tests showed anemia for sure, so we went to a hematologist. After a long while of trying this and that blood-building regimen to no avail, we went to a gastroenterologist, who took just a minute to say "He's got Crohn's, definitely."

That, plus a 15-pound box of bacon, quickly got him on course to regaining his weight and stabilizing his ailment.

So maybe consider another specialty?
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EMuir

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Re: Need some help dealing with doctor
« Reply #14 on: July 25, 2012, 06:17:52 PM »
Do not be afraid to cry or show frustration.  That's what finally got my doctor motivated to try something that helped me.  Some docs must think that people who can remain calm while in pain aren't really in pain.