Misdiagnosed: What would you do?

[qanda]

I've been suffering with the same symptoms for over four months now. It started with a really bad cold in January and then I began to have numbness in my face in February, which landed me in the hospital for 3 days while they tried to figure out what was wrong-- they sent me home with migraine medication. The numbness was on the left side of my face and then moved to my right upper lip. When I went to my primary care doctor in March I told him that it all started with a cold and asked if it could be related to some type of infection and he assured me that I didn't know what I was talking about and dismissed me with a referral to the neurologist. Well, I have continued to suffer with a swollen tonsil on the left side and cold symptoms on and off for the last few months.

Last week things took a turn for the worse and I woke up with my throat inflamed, pain radiating to my ear and a very swollen lymph node on the left side of my neck. I went to my doctor yesterday and saw a different doctor in the practice. They ran a strep test and because that was negative she said I didn't have an infection and even though she never felt my neck or checked my ears she said that I didn't have any infection in my body. I even explained to her that I am facing surgery at the end of the month to remove a breast mass and she seemed to be unconcerned. Her explanation for the swollen tonsil and red throat was that I probably had acid reflux and she dismissed me with a prescription for Zantac.

Well, I was so uncomfortable with her diagnosis and explanation that I went straight from my doctor's office over to a clinic and was seen by a nurse practitioner who promptly heard my symptoms, felt my neck and looked in my ears. She diagnosed me as having a sinus infection on both sides, but it is much worse on the left side. I started taking the medicine last night and instantly began to feel better. I didn't even realize that I hadn't been breathing through my nose until I actually could and cannot believe that I've had to suffer this long while doctors continued to dismiss me-- not one doctor looked in my ears.

I have no insurance and so all of this has been done out of pocket. Should I tell my doctors how completely irresponsible they have been with me? I told my husband on a number of occasions that I thought I had a sinus infection and I really don't think I should have to diagnose myself. On top of that, the way they have treated me as though I'm some idiot with no clue about my own body has been pretty disturbing, to say the least.

What would you do?

[RagingInMiami]

1. I would write a lengthy, detailed letter to the doctor asking for a refund

Considering you paid this out of your pocket. This is ridiculous but not surprising.

[Missy M]

3. We wrote a letter requesting a credit for a misdiagnosis.....

for a family memeber (he was diagnosed as having an inner ear infection when in fact it was bleeding in the brain). We still had to pay.

[qanda]

8. I don't think I'll ever see my money again

But I am certainly going to let them know that I don't appreciate having to pay for them being irresponsible. The doctor yesterday was the worst-- I cannot even explain how terrible she made me feel.

[Missy M]

10. I know how you feel. Some doctors won't even listen.....

to what you have to say. They think they are right and we know nothing. I think most people know how their body feels better than any doctor. I feel there is something drastically wrong with our whole health care system and many doctors are to blame for it.

[Crayson]

15. Doctors want to treat interesting illnesses...

... not annoying patients!

(a saying I heard ever so often with my joking medical student friends)

[still_one]

2. I would find a new doctor

[Frustratedlady]

4. Sounds like a good nurse practitioner!

I don't know how many times I have told a doctor what I think might be wrong, only to have them totally ignore me and look elsewhere for the problem. Is it ego? We seem to eventually end up treating what I thought was wrong in the first place. I have come to the point where I argue my case before I leave the office. After all, they asked me what was wrong. Most people can read their bodies pretty well.

Not only is a visit to the doctor expensive, but time-consuming.

[qanda]

9. You're right

I probably should have argued my case more. Although yesterday I actually began to feel uncomfortable asking the doctor to reconsider my symptoms. It got to the point where I said, "I'm no doctor, but..." She actually laughed.

[pecwae]

12. In my experience

NPs have better doctors than the MDs.

[still_one]

14. that is why people should get second opinions

I have NEVER had a problem with doctor as you describe. If a person goes to a doctor that does NOT listen to the patient, whose fault is it if the patient continues to see that doctor, instead of finding a new one?

[acmejack]

5. That's the norm for Doctors now

to treat patients as they are idiots, especially since the advent of these clinics where you are assigned a doctor. This wasn't the case when you could actually select your own doctor in the "old days", they had time to listen to and discuss matters with you. Now days they are trained to think they are masters of YOUR destiny and brook no interference from the patient.

It is much harder to find a doctor you like, I sympathize. I am a VA patient so I know...

[still_one]

16. no way. If you don't like a doctor get a second opinion or a new doctor

I have never heard such victim mentality. YOU ARE THE CONSUMER. They are just people. I do not have the issues you describe. Perhaps it is because I wouldn't put up with it.

As far as your comment "they are trained to think they are masters of YOUR destiny", that is BULL

Who is in charge of YOUR destiny, IT IS YOU, and if you sit back and take it, then you will pay the consequences

If you don't agree with your doctor, THEN GET A SECOND OPINION, even if you have to pay for it yourself. After all it is your life

[Quakerfriend]

6. I would also cc this letter to the hospital administration in

charge of patient relations and the CEO. Detail the exact timeline in your letter.

Good luck with it. And, please let us know how this works out.

[AndyA]

7. When a doctor won't listen to what patients are saying, that's the first

clue you've found a BAD doctor.

Not only would I write a letter of complaint to the doctor, I'd send a copy to your state's medical board as well. They need to know about these kinds of things.

[izzie]

11. I do not think health care is really a set thing.

Getting it wrong is understandable but if it is just foolish work it is another story.

[darkmaestro019]

13. Do you have a local "shame on you" sort of thing on the news?

I'd tell them the whole story in as much lurid detail as possible. With doctor's names. Nothing quite like maybe losing a future patient or two. Maybe we can find and use a fragment of this theoretical stuff about how competition would stop this kind of thing--if people know those doctors have a bad service/product they MIGHT lose business.

They love them some "filler" news and they love to look like they give a damn about the citizens where their little local news covers, so they MIGHT jump all over it, unless you run up against a missing blonde girl with impressive...genes.

(I'm not belittling your story--I have medical horrors aplenty, and I sympathize. I'm just sayin...it doesn't QUITE directly involve this whole Hell plus handbasket thing most of the bigger news does, which at least gives you a good chance of getting some air time.)

And you might cheerfully tell the doctors you're going to do this when you're fruitlessly seeking this refund.

EDIT: After all, for fk's sake--if you took a car in and PAID to have it fixed so it'd quit stalling at red lights and you paid THREE MECHANICS before you found one that actually FIXED that, you'd be owed a doggone refund from the first three. Why is this different?

[FloridaPat]

17. My brother is a medical malpractice lawyer. I'd have him get my

money back at a minumum. Also report the doctor to the state registration people - not that that would do anything.

[elias7]

18. some advice

To be fair, a sinus infection is not diagnosed by looking in the ears; rather it is a clinical diagnosis most of the time. CT scan or plain films can corroborate the diagnosis. Your physician may not haven considering a sinus infection if one was already ruled out while you were taken care of in hospital for 3 days. I would assume a head or face CT scan was part of your evaluation for the facial numbness, both of which usually catch the sinuses. Hopefully they imaged the parotid gland, inner ears, brain etc. for masses or infection. Did the neurologist provide good input?

I imagine that the NP needed a diagnosis that you were more satisfied with. You had just come from another doctor's office, who ruled out strep (the main thing to rule out with a red throat, swollen tonsil and elarged lymph node) and diagnosed GERD, (which is not a bad thought given the chronicity of your problem), and who may have had some background info with access to your regular doctor's notes and the hospital report. Undiagnosed sinusitis is certainly possible in this scenario, though an ear exam would be of little value. You might see some fluid behind the ear drums, which is non-specific, but in general, the ear exam is more useful in children. Your NP did not diagnose sinusitis on the basis of your ear exam. That being said, if you have pain in your ear, even if it is being radiated from somewhere else, an ear exam should be done.

An enlarged and reportedly painful lymph node can usually be easily seen, and need not be palpated; it doesn't mean it was not noted. I wouldn't get hung up on the ears never being looked at, nor would I hang my hat on the diagnosis of sinusitis just yet. But if the swollen gland persists, it must be further evaluated.

You have had symptoms for four months. You have felt better for one night. I suspect she put you on a decongestant in addition to an antibiotic, since antibiotics do not work instantly. I am also assuming you didn't take the Zantac, because that can start helping reflux in hours. Long standing sinus infections take 2 weeks or more to clear. If you don't steadily improve, I would a) get an ENT (ear, nose and throat) consult, and b) find one doctor you trust and stick with them. It's always tough to try to piece together a story when the pieces are in so many places.

[qanda]

19. Thank you for the advice

Are you saying that there's no way that the nurse practitioner could know that I have a sinus infection by checking my ears and listening to my symptoms? She did put me a nasal spray and a decongestant along with a 2-week antibiotic course. It was after I took the decongestant that I started to feel better. I've also been drinking a lot of fluid, which she recommended and it has helped me also.

Thanks again for your post, it makes me feel a little better about my situation and welcome to DU. :hi:

[elias7]

20. more by your symptoms than be your ears

Inflamed or blocked nasal passages can inhibit drainage from the ears and also the sinuses (a separate drainage system). When fluid collects in the middle ear, you can see this behind the drum. It often gets infected in kids, though not so commonly in adults, which is why docs don't put as much emphasis on looking in the ears as patients do. When fluid collects in the sinuses, infection is common if the drainage is blocked for about 10 days or so, which is why if you have allergies or a cold that is going on for 1 1/2 or 2 weeks, secondary sinus infection can occur, manifested by facial pain over the involved sinus, and maybe fever and malaise. Also, the drainage from blowing your nose gets more discolored, maybe sometimes bloody, and there is more pressure in the sinuses, especially when you lean over. People get toothaches, earaches, jaw pain, facial redness and numbness from acute sinusitis as well. Nasal congestion is a hallmark of allergy and colds, but like you, a lot of people either don't realize they're stuffed up (perhaps it's been so longstanding) or aren't asked about it in the right way. If I suspect sinusitis, I sometimes need to fish for the nasal congestion history. I can ask someone if they're congested or have a runny nose and get an answer of no, only to have them tell me minutes later that they cannot breathe through their nose. If you have a history consistent with acute sinusitis, you should be treated, regardless of what the ears look like, as they will only tell you if you have an ear infection or fluid, suggesting nasal congestion.

Untreated acute sinusitis can have some bad sequelae (invasion of bone, blood vessel, brain by infection, though these are rare even when sinus infections are untreated.

Then, there is chronic sinusitis, which is often a difficult diagnosis to make, since the above mentioned pattern is not present, and the symptoms, like yours, will fluctuate in severity and nature. This can be undiagnosed for years.

So in your case, if this is a sinus infection that is being treated, the little cocktail of therapeutics (including plenty of fluids) is right on the mark, though sometimes additional courses of antibiotics and an ENT consult are needed if not clearing up or if recurrent.