Medical Misdiagnosis -- Best course of action?

Interesting conversation between "yoda634" and "bggrthnjsus" (both are in their early 20's)

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Recently, I was extensively exposed to a sick relative, who eventually turned out to have tuberculosis. I visited him in the hospital most days for a couple hours or more, over the course of 4 months. For the last month or so, after they finally diagnosed it, there was added ventilation in the room, and all visitors were required to wear face masks. However, I still had three months of fairly heavy exposure. After he passed away, the hospital took down the names of frequent visitors -- there were three of us -- and told us to go get a TB test at the county board of health. I'm a fairly busy guy, and I didn't have time to drive over to the facility -- in a neighboring town -- so, after clearing it with someone at the board of health offices, I went to my campus health center for a test.

I was charged $10, and the test was administered -- the initial irritation/redness at the injection spot went away within a few hours as is normal, but over the next few days before it was read, the test site became red, irritated, and extremely tender, with slight hardened swollen area in the center, about the size of a dime. I went back to have it read, and the nurse practitioner/doctor (can't recall which she was at the moment) looked at it for a split second, poked it, and said, "oh, you're fine, it's negative" and signed off on a form saying that there was no induration (medical term for the hardened/palpable swelling at the test site, which is measured to indicate a positive result). I even asked about the definite irritation, but she insisted that was normal and sent me on my way.

The whole thing struck me as odd -- the fact that there was a reaction at all had me worried, and the complete lack of concern over what was, if not technically a positive reaction, definitely a reaction. I did a little research, and was not so sure that my test was read correctly -- I ended up taking a couple of pictures of it, but was not overly worried. As several other relatives who had visited the hospital went over the next few weeks to get theirs done, I compared notes with them -- none had any reaction whatsoever to the test. Also, others had been told to come back in 10 weeks to be retested -- which is apparently SOP for anyone who has had contact with a contagious patient. I had not been told anything along those lines.

Figuring better safe than sorry, I went over to the TB control center at the board of health Monday and got retested. Same reaction as before -- slightly larger (maybe the size of a penny) but otherwise the same as the first test. I went to have it interpreted this morning, and showed it to the nurse at the front desk on arrival. She very obviously instantly recognized it as clearly positive, but did not say anything, just had me sit and wait -- by the time I was called back to see the nurse who was going to do the actual reading, the forms for referring me for a chest X-ray (next step for a positive test -- to determine if the TB is active -- symptomatic and contagious -- or latent -- requiring preventative antibiotic treatment to prevent it from becoming active) were already half filled out, sitting on the desk. The criteria for a positive is a 5mm induration for someone with recent close contact to an active TB case, or a 10mm induration for someone in a lower risk category. Mine measured 15mm, and I was immediately sent for a chest X-ray. As I mentioned, the reaction to the previous test was exactly the same, except a little smaller -- maybe around 10mm.

So, here's the issue -- I believe a very serious mistake was made in the failure to recognize the result of the first test. Left untreated, my understanding is that the latent TB infection would eventually turn into deadly, communicable TB disease. This can be effectively prevented by catching it with the test when it is latent, and the administration of a rigorous course of preventative antibiotic treatment.Had I trusted what I was told at the campus health center, it would have gone untreated and eventually become a potentially fatal, highly contagious illness. I have no interest in suing them, despite the fact that I'm sure doctors have been sued over far less. What I would like is a refund -- of both the $10 I paid for the test and at the very least, the $270 I have paid in mandatory health fees this year, if not the $1100 I have paid in health fees over the past four years. This is my second time seeing a health care professional at this facility -- the first was after I got into a car accident and hit my head on the A-pillar of my car, and was suffering from pretty bad neck and back pain -- after a very brief examination, I was told "you might want to look up some stretches on google and do them."

First, does this seem unreasonable? The way I see it is that I have justifiably lost any faith I may have had in the facility, and at this point have spent a large chunk of money on a service that is essentially worthless to me, and that I have been put at risk by trusting that service.

Second, what would be the best way of going about this? My current thoughts are to write a polite, non-aggressive email to the Vice President of the university that is in charge of of the health center, stating essentially what I have stated here, explaining the situation and laying out my request. If that were met with resistance, my plan would be to work my way up the ladder, with subsequent communications in paper with documentation.

Any other comments or suggestions? I don't think I'm overreacting here, but maybe I'm wrong.
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a comment on tb:

1) latent tb is actually NOT that likely to develop into active TB if your immune system is relatively competent...even if you don't treat it. the reason they treat it anyway is just to prevent it from ever becoming active and therefore spreading it. i wouldn't worry about that one too much. bear in mind that the treatments for tb have a lot of side effects, and can pretty much ruin your liver, and you have to take them for 6 months. since those negatives likely outweigh the odds of you developing active TB anytime soon, i would try to wait on the treatment until absolutely sure you have latent TB (see below)

2) when you went back for the second test, you actually slightly raised your odds of a false positive test because of the previous exposure...which is why you're supposed to wait a long time between skin tests. note that the tb skin test is not very specific; it does not tell you if you actually have the disease (and by that i mean latent or active), only that you have been exposed to it. in addition, if you've had a bcg vaccine in your life (probably only if you were born outside the usa), you stand a higher chance of a false positive.

3) the test is pretty sensitive, but not very specific. so it is very good at being positive when people have been exposed, but at the cost of a lot of false positives. that is further compounded by the expertise of the person interpreting the test.

4) if you really want to be sure, go to a doctor and ask for a quantiferon test, which is a blood test that is both more sensitive as well as more specific...it's altogether a lot more accurate, although a lot more expensive.

so here's what i would do as far as treatment goes: if you really want to know for sure, take the quantiferon test. if it's negative, you save yourself hundreds of dollars in treatment. if it's positive, you kind of get screwed and pay for the test AND the treatment...but i think that is still better than taking the treatment when you don't actually need it.

as far as the legal stuff goes: it depends on what the relative was in the hospital for in the first place...if it was for something unrelated to TB and the TB was just an incidental finding, then there is no way they are going to give you anything for that. if it was for TB like symptoms, then they probably should've had that on their differential diagnosis right away, and there might be some level of liability there. in between that, if they were there for something lung related, and incidentally found TB, i doubt you'll get anything out of it. bear in mind that a lot of diseases are found incidentally...but i'm not really sure of the context here, so i can't really say anything for sure. it's unlucky for sure, but usually that is a perfectly plausible and innocent thing to happen in medicine.

as far as the fees you've listed though, i doubt you would be able to get anything back besides the $10 health fee for the tests. you probably also wouldn't get back anything from the past medical fees, no matter how bad your experience was. the problem is that you don't seem to have suffered any damages or injury as a direct result of negligence.

i think the letter is perfectly reasonable, and will probably make you feel a little better to let them know...but i wouldn't get your hopes up about getting any of your money back.
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Can't afford that test right now, I'm waiting on the results of my chest X-ray to come in Monday and am supposed to make a follow up appointment at that point, and I'll go ahead with whatever treatment gets prescribed to me at the board of health.

The relative was in the hospital for a misdiagnosis of TB symptoms that ultimately were determined to have been TB all along. Long story, but that's wholly unrelated. I'm not dealing with the hospital that treated him at all.
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in your situation as written, i think the hospital that treated him is the only one who has any remote semblance of responsibility for your situation. the people evaluating your TB test did their jobs properly, you probably had something a little under 10mm, which is negative. the second test can't be evaluated with any reliability since you got it so soon after the first one, especially since you had been exposed to active tb. you won't get any money out of the health center.

as for your treatment, bear in mind your treatment is going to cost a lot of money, and if you are actually TB free (which the quantiferon test could reveal), you will not only be wasting a lot of money, you will also be harming your health.

either way its up to you, i'm a big advocate of the blood test since it's so much more effective (it's actually probably going to become the standard in fields that require a yearly test), but the final decision is your prerogative. when you're talking about treatment with a doctor though, make sure you point out the skin test situation, because that might have an effect on what they decide. also remember that if your chest x-ray is negative, it shouldn't be too much of a risk to put off treatment for awhile. i'd try to get the blood test then, because a quantiferon test that is negative will most likely be less costly than taking the medication without a confirmatory test. just make sure the doctor knows the whole story.
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I certainly will discuss the whole situation with the doctor. The issue is -- I'm sure I can get the treatment covered under insurance. A secondary test, maybe not. I'll run that by the doctor I speak with as well, and see what their thoughts are on it.
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yeah if the antibiotics are covered, it might be a tossup. you'll probably take 6 months of an anti-mycobacterial, so it depends what your co-pays are. if it's 6 refills with $20 co-pays, it might be cheaper to just pay for the test (unless it comes up positive, then you'll lose even more money)...but if they give you like a single jar of 6 months worth of drugs then you're probably economically better off just taking the meds. it depends how much you value your liver though, they have some serious side effects. if they give you rifampin, your pee might turn orange, which is pretty cool.
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Yeah, I'll have to see.

I am moderately concerned about the hepatotoxicity of these antibacterials -- I'm a fairly heavy drinker.
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yeah you probably shouldn't be doing any drinking on them at all