Is there a right way to ask a doctor to consider your self-diagnosis?

In My Humble Opinion
1

I am conscious that doctors are generally less-than-thrilled with patients who diagnose themselves, but I wonder exactly when it’s appropriate to speak up when you think your doctor is missing something. (An office visit here is generally about ten minutes, so it often seems that way.)

I’ve seen my doctor a few times about chronic sinusitis which has led to a several infections per year for the past few years, and I’ve mentioned that I also have chronic pain in my carotid artery on the right side, also in the veins on my chest on the right side, for which I take an extra strength Advil every four hours. He shrugged off the vascular stuff (“Continue to take Advil if it works for you”) and gave me a referral to an ENT to discuss sinus surgery.

As I get up into middle age, I am less inclined to ignore aches and pains and more curious about what may be behind it, and as near as I can make out, it sounds like my symptoms are best described as [carotidynia](” Family Practice Notebook). (Throbbing pain at the carotid on one side only, anti-inflammatory analgesics manage it okay, and hey, it produces nasal congestion.)

I didn’t press it too far as he seemed singularly uninterested in the chronic pain and frankly in a hurry to have me out of the exam room, but hope that I can present it a bit better to ENT. I’d much rather have a course of prednisone and possibly be rid of the problematic congestion (not to mention the chronic pain) than to have my sinuses excavated. How do you put something like that across without sounding like one of those patients?

2

You are right that it is possible to come off as a know-it-all, and we go to doctors (and other professionals) precisely because they have expertise that we don’t. But at the end of the day, your doctor, your lawyer, your mechanic all work for you, and part of the job is being responsive to reasonable questions you might have about your health, your legal situation, and your car.

You don’t say whether you put your question about carotidynia to your doctor or not. My guess is that you haven’t and you might as well take a stab at it. As to how to do it, why not just say “Hey, Doc, I was looking into these persistent symptoms I have been having and they seem consistent with carotidynia. What do you think? Any easy way to check that out?”

If he is more dismissive than you care for, chances are there is more than one doctor in your general area.

3

You don’t sound like one of those patients. Your doctor sounds like one of those doctors.

It took me years to find a doctor that would take my ET (essential tremor) Seriously.

4

I’m curious how you know that the pain is in the carotid artery since there’s a whole lot of stuff in the small space that is your neck. I frequently have patients tell me they’re having pain in their (insert organ here) and then point to someplace that is nowhere near the organ in question so I would suggest describing the location, character and circumstances that trigger the pain is rather than calling it carotid pain. Then ask what they think the pain could be from to see if your self-diagnosis is even on their differential diagnosis. If carotidynia isn’t on their list then ask if they think your symptoms could be consistent with carotidynia. Ask for specifics about their thought process. Why do they/don’t they think it’s likely? Whatever is at the top of their differential, what makes them think it’s the most likely?

5

That’s it exactly. I bring my ideas up with my doctor, and he considers them and WE make decisions on my treatment.

6

My doctor is perfectly happy to discuss my self-diagnosis. He knows I’m an engineer, and have more than a passing interest in medicine. He’s actually interested in where I get my information from, and how I draw my conclusions.

There have been a few times I’ve brought up a minor symptom, and asked if he’s concerned about it. His usual response is “not unless you’re concerned about it.”

I’m very lucky - my GP not only knows his stuff, but he cares enough about his patients to want them to be happy and well informed.
You should feel comfortable bringing up medical questions. It’s am important part of the doctor/patient relationship.
-D/a

7

I think this is a reasonable approach to which a good physician should be happy to respond.

And it’ll probably work a lot better than if you said “I read about X condition on whatdocswonttellyou.com, I’m sure I’ve got it and why won’t you prescribe these drugs for it?”

As a pathologist who gets clinical information from other docs, what’s most important to me is getting a complete picture of signs, symptoms and imaging study results on a patient so I can make an accurate diagnosis. If they want to pass on their personal diagnoses or list of differential diagnoses that’s fine too.

8

I tried to go the route of getting them to tell me why they thought my diagnosis was wrong. “I’ve got symptom <x> and symptom <y> and drug <z> doesn’t seem to be helping, and from what I’ve read, that might mean I have <disease a>, not <disease b> as you keep telling me I have. Can you tell me where my logic is wrong?”

Didn’t do a damn thing. Doc not only couldn’t explain to me why I was wrong, but he doggedly stuck to his diagnosis.

I fired him, and went across the country to a specialist, who took one look at my chart and said “You’ve got <disease a>, not <disease b>. I don’t understand why they think you have <disease b>, nothing here indicates such.”

9

I did describe it generally at the first visit, and I think he believes that it is painful lymph nodes, since he ordered ultrasound and x-rays for sinuses and submandibular LN. (Which came back normal, apart from sinusitis.) I am certain it’s my carotid because the pain is at the point where you’d expect to find the carotid bifurcation, and because it palpably throbs when the pain flairs up, much more so than the other side, and enough that I can actually see it throbbing in the mirror. When I told him this he said that I may receive this impression because I’m holding my head to look at the affected side - but this is noticeable with my head upright and eyes forward. I am also reasonable certain it’s vascular inflammation because when it gets particularly bad the veins in my chest on the right side also hurt, most particularly a two-inch section that lies very close to the surface and which turns from pale blue to dark dark blue/purple when inflamed. Taking two ES Advil knocks the inflammation back when it’s flared up, and if I take one every 4 hours it’s kept at bay. (Though I usually wake up with some pain.) I don’t think it’s lymph because I’ve had the same symptoms since around 2002, and it’s always been unilateral, on the same side. (Also, there has never been any swelling of the lymph nodes.)

I didn’t get as far as mentioning the visible stretch of inflamed vein on my chest, because he’d dismissed everything I’d said before that and I had the impression he was eager to have me out of his exam room. So I just took the referral and hope that the ENT will be more inclined to listen to me.

Thanks for the suggestions about how to bring it up without sounding like a smart-arse or a hypochondriac or malingerer who’s picked an ailment off the internet. :slight_smile:

10

I’ve had this problem with a doctor as well. I had some kind of rash on my wrists and arms on and off for months and went to see the doc. I work in health care and have a PhD is pharmacology so i thought i had a good grasp of what it could be. Knowing that but not wanting to self-diagnose, i described everything specifically (where it appeared, when, possible triggers, and *what i had ruled out *for X reasons). The ruling out was to get him to go past the obvious diagnosis. But he stuck to it. I’d say well can it still be that if X is the case? I finally just accepted what he said and left. Went to someone else, got a logical diagnosis, was treated and fixed.
In other words, some doctors just don’t want to listen even when you are giving them an ironclad reason why their diagnosis can’t be right. So, don’t argue, just discuss, and i would personally never say “well i looked it up on the internet and…” that would make me tune out if i was a doctor.

11

When I get a symptom, the first thing I do is consult my 25-year-old copy of “Symptoms, Their Causes and Cures”. Nine times out 10 I am able to figure out what is (or isn’t ) wrong. I go to the doctor and tell him/her my symptoms without immediately sharing my self-diagnosis. Near the end of the visit, I say, could it be [self-diagnosis]. Doctors are generally non-committal; they want the test to tell them rather than jumping to conclusions. Several tests later, it turns out the book was right all along.

Over the years I’ve noticed that doctors are less and less interested in figuring out what’s wrong or treating the cause. They just want to treat the symptom, because that means putting me on a medication that will keep me coming back forever. (I’m in the US, in case that’s not obvious from context). I’m not interested in taking expensive pharma drugs that don’t do much of anything other than nasty side effects. I switch doctors a lot.

12

Larry Mudd, if a doctor is ignoring someone who is as knowledgeable as you have demonstrated in this thread, he is a fool. Present it to the ENT as you have here, and he should listen.

13

Most good doctors listen to their patients. The human body is incredibly complex for [currently] one person to understand all of it. A doctor that has no patience <snicker> with his patient’s self-diagnosis is too arrogant in his own self-worship to be of any value to me. Kinda reminds me of that grave marker inscription: “See? I told you I was sick!”

14

Tell your doctor that you were discussing your issues with an ENT you met at (your kid’s soccer game, a fundraiser), and that he recommended you get tested for (take out folded piece of paper with the word “carotidynia” written on it) “carot-id-ynia.”

15

Some doctors just refuse to listen. I honestly believe that some of them might secretly agree with a patient’s self-diagnosis, but they feel like they have to be contrarians just to seem more knowledgable.

So now I’ve learned to leave any “hunches” out of our discussions, and play dumb about everything biological (even though I have a PhD in biology and a penchant for independent research). I just list my symptoms, give my family history, and let them figure it out. Most importantly, I try my best to sound calm and reasonable when I tell them everything, and be as organized as I can when I speak. If you’ve got a wrambling list of disjointed complaints (my fingers twitch and my head hurts, and oh yeah, I’ve being peeing a lot too!) you come across as a hypochondriac and they’ll label you with the big ole “ANXIETY” label.

If they say they don’t know what’s wrong and refer me to someone else, that’s fine. But if they say, “You’re probably just anxious”, especially when I tell them that emotionally I feel fine and I’ve been speaking calmly the whole time, I move on. I’m not denying that anxiety plays a role in certain physical disorders, but if I’m describing a problem that has symptomology similar to a serious somatic illness and it is getting progressively worse over the course of many years, I’d think you’d want to save the “anxiety” label until everything else has been ruled out. At least, that’s my non-medical expert opinion.

16

The easiest way to do this is to “shift” the idea to another professional. No professional likes to be told he may be screwing up or neglectful.

So you could say something like "I was in NYC last week and felt awful, so I went to one of those Walk In Clinic at (Instert Name). Anyway the doctor said, I was fine but I should have my family doctor run tests on (insert what you want done). Do you think this is something we should look into?

Now it looks like ANOTHER DOCTOR brought up the idea. Your doctor will say, “Yes or no.” And you can take it from there. If he refuses outright, you may want to find another doctor.

17

Personally, I love it when people attempt to self diagnose, but ONLY if they are good at it. The reason why doctor’s are dismissive of self-diagnosers is because individuals with histrionic or hypochondriacal personalities often self diagnose and they often want invasive or deleterious medical procedures performed that are not indicated given their presentation. That being said, if a patient has a background in science, and provides rational, thought out reasons for their beliefs, I am more inclined to listen to them rather than if they come in holding a wikipedia printout.

That being said, really a doctor has three options when dealing with a self diagnosis. Your either humor it, agree with it, or dismiss it. If you think the patient doesn’t really have the expertise required to understand their disease fully, and if you just want to avoid a confrontation/maintain good rapport, you humor them so long as their beliefs don’t lead to self injurious behaviors (taking unneeded meds, undergoing unnecessary surgery, etc.) If you think they are right, then obviously you agree with them. If they are wrong, and their beliefs would lead them to harmful consequences, or you have other compelling reasons to do so, you try and explain why their beliefs are incorrect and you try to educate them as much as possible.

In your case, I would have humored you. It sounds like your first doc dismissed you. Here are the reasons why I would have probably humored you.

Carotidynia just means carotid pain. Caroti = carotid artery, and dynia = pain. Slinging words around which seem impressive to laypeople, but are common use to doctors, erodes your position and makes you seem less credible. I’d avoid doing so at your ENT visit. You would be much better served by saying, “My neck hurts here, and here are some other symptoms I’ve been having.” From your explanation, it seems as though you are also confusing carotidynia with carotid arteritis. While carotidynia is a very nonspecific term, carotid arteritis is a very specific clinical entity which is an uncommon form of a relatively common vasculitis, which are in and of themselves uncommon. It is also a clinical emergency because giant cell arteritis can cause blindness.

The second reason I would have humored you, and probably the biggest, is that you wanted prednisone. Prednisone is a bitch. A big, big, big bitch. No one likes being on prednisone because it makes you feel horrible. No doctor likes prescribing prednisone because it makes patients feel horrible. However, sometimes we have to because it is the big gun of big guns to stop inflammation. The fact that you wanted to take prednisone would have told me that you probably have a tenuous grasp of what you are talking about. Prednisone isn’t something to be excited about, its something to dread.

That being said, you should have mentioned the veins on your chest. Furthermore, take pictures! Its really hard for a doctor to ignore physical proof. Just from your description, I can’t comment on whether your self diagnosis is correct or not, but it is certainly worth checking out with your ENT.

BTW, I’d suggest that you ask your ENT if getting an Erythrocyte Sedimentation Rate (abbreviated ESR) would be OK. If you explain your symptoms, including the veins in your chest, your ENT will probably agree to do the test. They will probably agree because it’s cheap, simple, noninvasive other than a blood draw, is strongly positive in most cases of giant cell arteritis. Also if they miss giant cell artertis, it could have HUGE implications including a malpractice suit.

Good luck.

18

IMHO, any doctor that blows off a complaint of chronic pain is not a good doctor. Find yourself another one.

Since you’re seeing the ENT, if this doc is worth anything at all, you can just tell him that your primary doc poo-poohed your complaint of chronic pain, so you did some research and do you suppose it could be this? If he disputes that it could be, press him to tell you what else could cause your pain (and possibly sinus trouble). Don’t leave until he gives you an answer. It’s his job to answer all of your medical questions.

19

:rolleyes:

The doctor can be firmly and correctly convinced that a patient’s self-diagnosis is wrong despite not having an explanation for the patient’s symptoms, you know.

20

This carotidynia thing you mentioned, doesn’t really help your problem. Carotidynia is just a vague way of saying you have pain in the region of the carotid artery (at the bifurcation usually).

That is usually an idiopathic disorder, so you can only treat it symptomatically. The most important thing in your case would be to rule any serious condition. Then if you don’t find anything you can put some label like “carotidynia” on it if you like.

  1. why don’t you try with some prednisolone for a couple of days and see if it works?