When doctors fail to diagnose

In My Humble Opinion
1

My mom has a life long has a lifelong illness. She has been having health problems off and on for the last two years, and has been hospitalized numerous times. Once she almost died. Seriously. Things she has been hospitalized for: severe leg pain, nausea and vomiting, lightheadedness, kidney and liver failure.

The issue is that she keeps returning to the hospital for one or more of those above things, but they have yet to give a flat out diagnosis. Again she has a disease that she was born with, that MAY be causing those above problems (according to the doctors). However, I’m not convinced. She’s in her 50’s and she has not been having any of those problems until the last two years. I think whenever doctors look at her chart, they just blame her illness on anything health problems that she is having at that time.

I believe that she is experiencing a separate illness, that for some reason, has not been identified yet. Is it common for patients to present problems that doesn’t come with a specific diagnosis? Is it common for patients who have previous illnesses to have new diseases/disorders overlooked because they think symptoms are caused by those previous illnesses? What’s the next step should me and my family take?

2

Does your mother have a primary care doctor? When you say she goes to the hospital, do you mean the emergency room? ERs are for immediate care, not chronic health problems. I went to the ER a few months ago with severe lower back pain- did they give me an xray or MRI or do anything in any way to find the cause of the problem? No, they gave me a shot of painkiller and sent me on my way. It’s up to my primary care doctor, or a specialist he refers me to, to diagnose my problem, not the ER. I do hope your mom gets to the bottom of it and finds relief.

3

Yes, she has a primary health care doctor and a hemotologist. When she goes to the ER, she is usually admitted to the hospital.

4

Since she does have a primary care doctor, has she considered seeing a different one, since the first one doesn’t seem to be giving her the answers she seeks? A fresh look from a new doctor’s eyes can sometimes help, and her regular doctor shouldn’t be insulted by a request for a second opinion.

5

I agree that she should see a new doctor for a second opinion.

Has your family, or your mother addressed her concerns to the doctors who were treating her while she was in the hospital? I had a family member go through something similar, and we finally got answers by laying out the facts to the hospital doctor who was able to run tests on my mother while she was still in the hospital, and was able to transfer her to a hospital with more resources.

6

Some hospitals (Mayo Clinic being the most well-known) have diagnostics departments for cases just like this. The patient stays for a week or so (usually in a local hotel) while she is seen by multiple doctors and multiple tests are run.

7

Princeton Plainview has a popular program in diagnostics; unfortunately they only take one patient a week and none in the summer. Plus the chief is a total dick. :wink:

8

Yes. Happens all the time. It frustrates the hell out of me.

It’s not unheard of, but it’s not common. I’m in the sticks, so more often than not when the local specialists and I can’t offer a satisfactory answer patients end up going to larger cities and tertiary referral centers. I can’t remember the last time one of them made a diagnosis when we couldn’t.

The one time I see that sort of thing is when a single doctor has been providing most of the care. It’s easy to develop tunnel vision. I have gotten patients from other PCPs who had a diagnosis the other doc was completely overlooking, and vice versa. But when I’m the third or fourth doctor, including any relevant specialists, I’m usually pretty sure the answer won’t change.

Definitely another pair of eyes, in the outpatient setting. You can tell her PCP that you’re planning to do so; if he has a problem with it, you should find another one anyway. He might even recommend somebody. But you should also be prepared to accept that sometimes there isn’t a satisfying answer.

9

Plainsboro. Princeton-Plainsboro. :slight_smile:

10

It’s probably lupus.

11

It is never lupus!

12

Apologies if it seems I was making light of the OP’s problems. I can sympathize with the hard to diagnose problem.

13

As much as mankind knows about the workings of the human body, there is quite a bit that we don’t understand at all. It’s easy to get frustrated at medical personnel and accuse them of being lazy or not caring because your loved one cannot be diagosed correctly. But doctors have didn’t create the human body, they’ve just been trying to reverse engineer it for hundreds of years, with some success.

14

Your options are pretty limited. If you think the doctor is wrong you can only do one of two things:

  1. Get an opinion from another doctor.

or

  1. Learn about the problem yourself, come up with a diagnoses and then have a doctor check it out using his equipment.

I would suggest option one. While it can be difficult to find a good doctor, I would try looking through RateMDs. They do not have enough ratings to be really helpful, but it beats picking a doctor at random.

15

The best person in the community to ask about doctors is the pharmacist. You might have to ask a few to find one who really has an opinion, but they usually have a pretty good idea of who’s good and who isn’t.

16

When I was young around 16, I would get very dizzy. I would go to an ENT and he’d give me an ENG and it’d come back positve saying I have problems with my ear. Then they’d kind of shrug.

Then my mum died, well then everythign was because my mother died. I was getting sick to my stomach and dizzy all the time. I went to a pyschiatrist who recommended I have and ENG. I said, “I’ve had it twice, it’s positive” he said “Then why are you here, you’re normal.”

I said, “I don’t know,” the doctors said, it’s pyschological 'cause my mother died.

He said, “if the ENG is positive, something is wrong.”

This went on till I was 19. I was reading in a medical book and came across, Meniere’s Disease. I went back to my doctor and he said “No, you’re too young.” I said, “Well something has got to be done, I can’t keep falling over.” He said "Well we’ll treat you for Meniere’s Disease and see.

It worked ASAP.

When I was 28 I developed asthma. Doctors didn’t care. I was so bad off, I would be afraid to cross a big street like Michigan Ave in Chicago, as I thought I’d run ou of breath. I finally found a nice doctor and said “This is where I am, this is where I want to be.” She sat down and told me how to do it. Now my ashtma is 99% improved. Whereas in my late 20s I was going through two inhalers a month (steriod and rescue) I now can get by with one rescue inhaler every year or 18 months.

This doctor actually told me how to properly USE an inhaler. To this day if I see a fellow asthma suffere I show them and they never use it right and when I show them they’re all suprised at how well it works.

Some doctors just can’t be bothered. Others are very good.

The bottom line is you’re the consumer. If you’re doctor isn’t giving you results get a new one. Look and keep looking. Try a research hospital and don’t quit looking.

But you also have to LISTEN to the doctor. You have to ask specific questions and do what he/she says and follow the treatment plan. A lot of bad doctors are a result of patients not following their advice.

Or not understanding. If you’re doctor is using big words, tell him/her to explain it simply. You’re paying their fee. They owe it to you.

Good luck.

17

Excellent advice sir.

18

When my grandmother was 65, her doctor failed to disclose to her that he found a lump in her breast. She only found out because she changed doctors because she did not like him. She found out about it when her new doctor asked her about the lump. Fortunately, the lump was benign. The first doctor thought she was too old to bother treating. She lived another 18 years.

My son has a disease that first presented with distinctive spots. When I asked his ped, and she told me they meant nothing. When he started developing asymmetrically, she told me to put his toys on the weak side, to help him build the muscles up. Then a purple lump emerged and so she accused us of beating him, rather than make a diagnosis that could be made at that point by noting the location and size of his spots. We found out from medical professionals in his new pediatrician’s office she does this whenever there is a case that is unusual. They knew of over a dozen cases.

Some doctors don’t like to bother diagnosing anything that might mean a bit of effort from them would be expected. Some don’t bother to diagnose when they think someone has lived long enough. Get a second opinion.