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sapphirrasmagick
11-01-2006, 01:15 AM
So...I was diagnosed August 17th with Lupus by my primary care physician.
What I was told was the last test came in, she called me, and she told me.
I asked her flat out, "are you SURE?" and she said yes, and I said, bummer.
She told me I should come back in three months to have my organ functions tested.
SO, it's a little early but I was concerned about the upcoming dentist appt. I had, and also my lungs are aching.
I had some questions, and thought I'd make an appt. and get the organ tests done all at once.
Well, after some phone tag, a nurse comes on the line and says to me, tell me more about your lupus diagnosis.
I said what do you mean? She says, tell me what the doctor told you.
I did, and she says, well, according to your chart, it's not certain you even have lupus.
I said....what???
She said, the doctor says she isn't actually sure and needs to do more tests.
I said, that is NOT what she told me.
For crying out loud, I've told all my friends, my family...I've spent lots of money on books, I've joined this support group.
I've been living the last three months as someone with lupus, and now you're not even SURE?
By this point I'm so upset I can't even talk anymore, so my mom gets on the phone.
The doc tells her, well, she thought she'd spare me and not put me through the stress of more testing right then.
Wtf? Like, telling me yes, you're SURE I have lupus and then out of the blue saying, no you're not sure isn't stressful?
I just want to know one way or the other for sure and have a diagnosis!
If I don't have lupus I just dinked away 3 months of my life feeling like crap, when I could have been trying to find out what else was wrong and maybe getting treatment for it.
Doc says, well, you can come in and I'll do the additional testing...I guess it's the anti-double strand DNA thingee?
And she wants to test for antiphospholid antibodies?
She then backpedals and says, well I'm 99.99% sure you have lupus.
She apologizes three times for the "miscommunication", and I said, well you know...I really don't know if I want you doing the testing.
You can't even remember what you told me 3 months ago, you tell me one thing and then say another, you can't find my chart, you can't remember anything in it...this is my life you're messing with, and I want a referral for a specialist.

SO....until I can get in to see one, I have no idea right now what's going on.
I have so many of the symptoms, it explains so much...I feel sure I have it, and I'd feel better if I had an actual diagnosis on file.
On the other hand, if I don't really have it then I'm back to square one.
I'm sick with something, but then I won't know what and have to start all over...maybe it would be something less worrisome, or maybe something worse.
I'm so stressed out right now and I can't believe doctors can pull this crap on patients.
And in the meantime, I have no answers about my dentist appt. so I cancelled it.
My chest and lungs still ache, and I'm so angry, upset, confused and tired I don't know if I'm coming or going.
GRR!!! Whoever posted about hating doctors, I'm right there with you.

:mad:

MARYCAIN
11-01-2006, 07:37 AM
First, take a deep breath and calm down! This level of stress is doing you absolutely no good and will probably make you feel a lot worse later.

Second, unfortunately this type of problem is very common, and doesn't mean your doctor is incompetent or inconsiderate - it's a fundamental issue of miscommunication between doctors and patients. I work in a law firm that primarily handles malpractice claims - medical, dental, etc. - so this is an issue that we see a lot. You see, a doctor knows that no diagnosis is 100% sure - it's not possible because there are always variables involved - so when a doctor says he's sure, he doesn't mean absolutely, positively, no room for doubt sure - just that he's reasonably sure. But most patients want absolutes and think a doctor's diagnosis is an absolute - and this can cause a lot of problems. It's like trying to communicate in two different languages - miscommunication is almost inevitable. And most doctors are not very effective at communicating with patients anyway, which compounds the problem.

Third, lupus is one of the most difficult diseases to diagnose because it is the "prototype" auto-immune illness - it can present like any one of a hundred different diseases, which is why it's called the great imitator. A lupus patient who goes to four different doctors is likely to get four different diagnoses - kind of like the blind men describing the elephant, the part they have hold of is what they describe. There are over 100 different forms of arthritis, over 80 different distinct autoimmune illnesses, and a huge number of other systemic diseases like Lyme disease and CFIDS that can look like lupus. That's part of the reason why it takes the average lupus patient seven years to get an accurate diagnosis. And many doctors are reluctant to put the diagnosis on the chart even when they are sure, because they know it affects a person's ability to get health and life insurance - so they make chart Lupus-like disease or "probable lupus".

As far as having the worst doctor ever, I don't want to hurt your feelings, but I think you need a reality check here. I spent a month in the ICU on a ventilator and dialysis and four months in the hospital because my doctor diagnosed my severe back pain as muscle spasms instead of a massive spinal infection. I'm currently consulting for the estate of a 29 year old woman who died of breast cancer because her doctor told her she was too young to have it. Another client is in a wheelchair because her doctor missed MS and thought she was bipolar. so, no, you don't have the worst doctor ever - neither did I - the worst doctors are the ones that kill you. Doctors are just people - they make mistakes like every one else. Your doctor is taking your symptoms seriously instead of dismissing you as a hypochondriac - she is listening to you and trying to help you - she apoligized for upsetting you instead of deciding you're too much trouble as a patient and firing you - she is planning to monitor your condition and try to help you - by those standards she is far ahead of many doctors. So think about it - if you're expecting a doctor who is perfect and never makes a mistake - they don't exist.

I realize that this is a very stressful time for you, but you have to realize that you can't "live like someone with lupus" because your doctor said you have it. You don't live like someone with lupus - you just live! Sure, you make changes and adjustments, but so do a lot of people. You don't lock yourself away or become a hermit or live in a darkened room for the rest of your life. The disease itself makes changes in your life - not the diagnosis. So please try to put this in perspective. Things like this will continue to happen - you cannot let your illness define your life or you who are as a person, or your life will be very unhappy indeed. Sapph, I don't want to hurt your feelings - I know you were truly and deeply upset by what happened, but it doesn't really change your diagnosis or your doctor's planned course of treatment - and with lupus, you have to learn to accept uncertainty and unpredictability in everything or your stress level will be unbearable. So please, keep taking these deep breaths, keep your appointment, and have the additional tests to confirm the diagnosis. then go from there. Okay? You are a very strong person and you will get through this.

sapphirrasmagick
11-01-2006, 10:03 PM
I do understand what you're saying...but the reason I'm upset isn't because she isn't sure...if she'd been up front with me and said that three months ago, and told me I needed additional testing I would have been fine with that.
I would have been in her office ASAP to get the rest of the testing done so we could get to the bottom of this together.
That's not what happened...
she called me three months ago and told me she was sure, and she didn't say anything about additional testing.
I asked her flat out, are you sure I have lupus and she told me yes.
Not that she's almost sure, or that I need more testing. YES.
She told me YES I am sure you have lupus and that's all there was to it.
She didn't explain anything to me, or outline any treatment plan, or anything else after that.
This has been really stressful on me, my family, my friends...I've lost friends over it.
If I don't have lupus now I'm supposed to say to everyone I know, Oops! Sorry guys! My doctor was sure I had this disease but maybe I don't.
Sorry to put you through all the stress.

To have her then completely deny saying this to me, to not even remember this conversation, to have her come on the line and say well, I never said that and maybe you don't have lupus after all...I mean, this is not cool.
This goes beyond simple patient/doctor miscommunication.
And when my mom got on the phone and told her that she was standing right there, had heard the conversation and that yes, she DID say that, she backed off and started apologizing.
Up until that point she had been perfectly content to make it sound like I was imagining things or making things up.

This is a doctor who has lost test results and made me come in to do more bloodwork again, forgotten who I am, misplaced my chart, can't remember anything that's in my chart, who says she'll let me know my test results and then never calls back, waits for me to call, then has no idea what I'm talking about.
And it's a doctor who diagnosed me with a disease and then can't even remember doing it and won't stick by what she said.
It's a doctor who is "almost sure" I do have lupus, but isn't even concerned enough by my chest/lung pain to see me and make sure I'm okay.

So, you're right, I was venting....she's not the worst doctor in the world.
But in my book, it is incompetant and not very considerate.
I don't think it's at all logical for a doctor to make a personal decision to withold information like that to "spare" a patient from going through the stress.
I want a doctor to find what's wrong with me, tell me everything I need to know as it happens, and work with me to make me feel better and treat me.
I don't think that's too much to ask for.


BTW...since nobody at that clinic would see me, I ended up going to the hospital for my lung pain.
I've got acute bacterial bronchitis.

MARYCAIN
11-02-2006, 07:18 AM
Yes, you're right - this is a different situation - if this had been a single incident of misunderstanding, that's one thing, but an ongoing pattern is a lot more troubling, especially if she denies having ever told you the diagnosis in the first place.

Unfortunately, as I said in my first post, most doctors are not very good at communicating with patients and a lot of them don't think the patient has any right to be involved in decision-making or have access to lab tests and results - the doctor justs tells them what he thinks they need to know. It's part of the patriarchal system of doctors thinking they are godlike and omnipotent, and even women doctors are guilty of it too.

At this point, there may be too much bad feeling between you and this doctor to ever build the trust necessary for a good doctor-patient relationship. Is there a doctor you do trust and feel comfortable with? If so, that may be the doctor to ask for a referral to a rheumatologist. If the diagnosis is lupus, and I suspect it will be, you really need to be managed by a rheumie anyway.

If there isn't another doctor to refer you, then ask your current doctor. This is a situation where you need to be very professional and very assertive, and calmly explain that you would like a referral to a rheumatologist for a second opinion and treatment options. Avoid getting angry about her past conduct and don't put her on the defensive - you need her to get the referral! Once you're safely settled in with a rheumatologist, then you can write her a letter expressing how you really feel, or even file a complaint with your state's medical licensing board. But most rheumatologists and other specialists don't acceot new patients without a referral under any circumstance, so you need her to work the system.

And Sapph, there's really no need to tell your friends right now that the diagnosis might have been premature. Regardless of whether you have the official diagnosis in your charts or not - you still have the same fatigue, the same pain, the same symptoms you did before. So really nothing's changed except the label. Hon, you have to accept the possibility that you might not get a definite diagnosis right away even from a specialist - it takes on the average seven years and 4-5 doctors for a patient to get an accurate diagnosis - and many patients are left with a diagnosis of "lupus-like disease" because their symptoms never quite fit the specific criteria for lupus. But LLD is treated the same as SLE - the only difference is that an LLD diagnosis means the patient may not be elgible for a clinical trial. And the diagnosis you start out with is often not the same one you end up with - my initial diagnosis was UCTD, then scleroderma, then lupus, then lupus/scleroderma overlap plus sjogrens and a handful of other things. Because patients with one autoimmune illness often have more than one - it can be very confusing to determine which symptom is caused by which illness. So many of us will end up having more then one diagnosis - others will end up with a broad diagnosis of LLD or UCTD or MCTD.

It is almost impossible to explain all these distinctions to your friends and family, so most people don't even try. It's easier to just say I have lupus and let it go at that. So maybe that's the approach to take with your friends. Later, when you know more about what is going on, you can explain specifics. But unless any of your friends lives with a chronic illness, it's going to be really hard for them to understand just how frustrating it is to be sick and not know what's causing it, or how hard it is to feel like you are living in a limbo.

You might want to go to the website for the Invisibilty Disabilities Advocate - www.myida.org - they have some good articles you can print to share with your friends. And the American AutoImmune Related Diseases Association - www.aarda.org - has information about the different autoimmune illnesses.

And Sapph, I meant what I said about your being a strong person! You can and will get through this. Please understand that when I tell you to calm down and not be upset over things, I don't mean you don't have a right to be upset, you certainly do, it's just that stress is one of the worst things for lupus - it can trigger a flare or exacerbate an existing one. Stress can literally make us sick, so sometimes we have to make a conscious effort to control it. It's even harder for people with lupus because we don't have the luxury of going for a jog or working out in the gym of all the things that normal people do to work off stress. I do understand how angry and frustrated you're feeling right now, and I wish there was a simple answer. There isn't because the medical system in many ways is stacked against patients, and we need doctors to help us work the system.

I do think it's a good idea to get copies of all your medical records - you will probably need to send a request in writing. Don't bother sending it to the doctor directly, address it to the "Medical Records Custodian", Office of Dr. _______, then the address. Some offices charge you for copies, in some states the patient is entitled to one free copy, but this varies from state to state. If you need more information how to do this, let me know, and I'll try to find out the particular laws for your state.

sapphirrasmagick
11-02-2006, 02:17 PM
I did request copies of my records yesterday...they should be coming in the mail in the next week or two.

On the phone when the doc started asking me to come in for the other blood tests, what I ended up saying was that I would rather have a specialist do it, and she then suggested someone at the hospital she is affiliated with.
The last specialist she sent me to at that hospital was so amazingly rude he made me cry, so I wasn't keen on that idea.
(He's an endocrinologist and I was trying to get to the bottom of why I feel so lousy...he said to me, it wouldn't be fair to other people do a bunch of tests to find out whether anything is wrong, and that if my head hurts I should see neuro, if my throat hurts I should see an ENT and that if I'm depressed, which he thinks I am, I should go see a shrink. Then he told me to quit drinking coffee and sent me packing.
She then sent me to an ENT of her choosing who told me that coughing up smelly chunks and digging out tonsil stones with a q-tip is something all adults with tonsils have to do, it's really more of a cosmetic problem, and that he thinks I don't actually have that problem anyway, even though people have actually seen me cough these suckers out onto the floor. He told me he thinks I have GERD which causes the "sensation" of something in your throat, gave me an rx for Nexium, told me to quit drinking coffee and sent me packing.)
So I said I would rather find my own rheumatologist closer to my town on my own and she said when I find one I can can call her with the name and she will give me a referral.
So that's okay...when I was at the hospital I asked them if they had a rheumatologist on staff and they said there are two of them that come in from Madison.
I'm waiting for them to call and let me know their names so I can get the ball rolling there.

I get what you're saying...I am calmer today, but still upset.
I understand it can take a long time to get a diagnosis...but at the same time, I feel like I've been waiting since I was 14.
That's when I started feeling sick, and they said I had Hashimoto's and put me on levoxyl.
And no matter how faithfully I took it, my TSH levels never were normal and the medicine never made one tiny bit of difference in how I felt.
Ever since then I've been saying something still isn't right and ever since then it's been one doctor after another passing me off onto someone else or telling me it's in my head, while I keep feeling worse and worse.
To get this close to an answer and have it be taken away after all these years...it's just hard.
I know you're right and it's just a title, and it doesn't change how I feel...
but I guess in a weird way it feels like a title I've earned, and I had some hope that maybe I would get treatment that would help me feel better.
I've spent ages 14-28 feeling like an old woman and missing out on things because I feel too crappy to do so many things...getting any hope of feeling better and then seeing it get taken away again just really hurt.


:P

MARYCAIN
11-02-2006, 02:29 PM
You can find information on all the board-certified rheumatologists in your area at the American College of Rheumatology website - www.rheumatology.org/directory/geo.asp

So if they don't call you back, you can look on the website for info.