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Donnachaidh Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 01:40 PM
Original message
How Kosher is it for a doctor to diagnose a patient and then not tell
the Patient about it?

I've been in a pain-management program for years, with a very specific nerve problem. I've been on meds and an implant for about a decade.

I just received a letter from my pain doc's office, inviting me to join in a study for fibromyalgia. Evidently they have a new med they want to try out.

What alarmed me was the notation that I am one of the doctor's listed fibromyalgia patients(!!??!!) and that is why they were sending me the note.

I'm VERY alarmed. If I have this (according to the doctors) WHY wasn't I told?
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Lerkfish Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 01:45 PM
Response to Original message
1. time to get a new doctor.
like, immediately.
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Speck Tater Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 01:46 PM
Response to Original message
2. As I understand it...
Edited on Fri May-04-07 01:47 PM by fiziwig
fibromyalgia is a blanket term that covers several more specific conditions. It may well be that your specific condition falls under the more general term, and so qualifies. It would be as if you saw the doctor for an ingrown toenail and ended up on his "foot pain" list. It doesn't mean that you have some "different" condition known as "foot pain", only that your specific condition, "ingrown toenail" falls under that broader category.
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Donnachaidh Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 01:57 PM
Response to Reply #2
8. that's just it -- mine isn't something that can be generalized
It was caused by a very specific accident over 20 years ago. It's all centered in my elbows.

This is such a RARE problem an earlier doctor had to search for 2 years to get documentation to get my implant done.

There is no WAY this should be lumped in with any other sort of condition.
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Speck Tater Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 02:17 PM
Response to Reply #8
13. In that case...
perhaps your doctor has reason believe you might benefit from the treatment even though your condition is different. Rather than ASSUMING you know what the doctor is thinking, give him a call and talk about it. Anyone who has watched TV, from I Love Lucy onward should realize that the most frequent cause of the kind of misunderstandings and confusion that form the basis of comedy is when one party makes an assumption about what the other party is thinking. This always leads to zany hijinks, foolish choices, and needlessly hurt feelings. Don't assume. Don't jump to conclusions. Get the facts.
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Donnachaidh Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 02:36 PM
Response to Reply #13
18. I wouldn't have to jump to conclusions IF he had bothered to TELL me
right?

I'm not jumping to conclusions, and I'm getting my information right now from others. But I wouldn't BE in this situation if he had been OPEN and HONEST about this.

And to find out that I've been labeled with this, via a letter promoting a drug study? You honestly think I have no reason to get outraged about this?
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Speck Tater Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 02:49 PM
Response to Reply #18
20. I once saw a lady...
... who was outraged to the point of screaming for the police and knocking things off the tables because the kid behind the counter had put pickles on her Big Mac when she specifically asked for no pickles. Different folks have different thresholds for what it takes to set off their outrage response. Your threshold is your choice to make. Be outraged at anything you enjoy being outraged at. Doesn't bother me one way or the other.
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Donnachaidh Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 03:31 PM
Response to Reply #20
21. Tell me -- are you employed in the medical profession?
Because your posts are quite revealing.

Someone having an MD behind their name does not guarantee perfection in care or treatment. But it 'does' guarantee a snarky response when you question their motives.
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aquart Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 01:48 PM
Response to Original message
3. First, call your doctor and get an explanation.
Then go from there.

My sister has fibromyalgia and there are things you should definitely have been told. For instance, she gets a writeoff on her air conditioning system because she can't handle heat.
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crikkett Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 01:49 PM
Response to Original message
4. As an aside, i read that diet sodas containing aspartame (nutrasweet) can trigger fibromyalgia
Aspartame degrades into some nasty poison when it gets too hot and the poison accumulates and triggers fibromyalgia.

So skunk sodas can really hurt you.


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Donnachaidh Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 01:59 PM
Response to Reply #4
9. I don't drink diet sodas
Never have LOL!

But I'll make note of that - thanks!
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polichick Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 01:51 PM
Response to Original message
5. Wow, that's not right!
Edited on Fri May-04-07 01:51 PM by polichick
I've heard of a gynecologist who didn't inform his patients they had VD and viewed it as doing his part to keep families together, since the woman might leave her husband if she knew he'd passed a disease on to her. He'd treat them with meds but call it something else. This was some years ago, but still outrageous!

I'm sorry you've experienced this. Have you confronted the doc about it?

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Donnachaidh Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 02:01 PM
Response to Reply #5
10. Not yet. I'm trying to let my outrage settle down
What 'really' bothers me is this -- what exactly have they been billing my insurance for? And what ELSE might there be in my records that I haven't been told?
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polichick Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 02:18 PM
Response to Reply #10
14. Good idea to gather your thoughts first.
I'll bet it does have something to do with insurance billing ~ what doesn't these days?

Think I'd pay a surprise visit and ask to see my file.
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MindPilot Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 01:51 PM
Response to Original message
6. Because medical people think you are stupid.
I recently spent 3 days in the hospital with horrible chest and abdominal pain. After tens of thousands of dollars worth of tests (thank dog I have good insurance) the best they'll give me is "you got some kinda of flu bug. Um, does said "bug" have a name?

The nurses are the worst. "Did you go number two today?" Look, I'm 52 fucking years old, you can say "defaecate" or any of the other 400 words for shit, but don't talk to me like I'm three.

You are just too dumb to be told anything remotely technical about your own health.
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no_hypocrisy Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 01:54 PM
Response to Original message
7. Got one similar to yours.
My mother was being treated for lung cancer and thought it was the "do-able" variety. Not so. She was Stage IV and dying, but her doctor (Maria) didn't tell her. My father intervened with her doctor, asked the doctor to not say anything, that he would tell her, but he didn't. My mother couldn't understand why she wasn't responding. Finally when she was in the hospital alone with her doctor, she demanded to know if she was dying and how long. The doctor stammered and confirmed Mom was dying and she didn't have a week. Mom was too infuriated at Dad to be consumed by the fact of her impending demise. All of her decisions were taken away from her and she was kept in the dark (actually all of the family save for our father was in the dark).

My point: Get another doctor fast.
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terip64 Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 02:09 PM
Response to Reply #7
12. I am so sorry. That must have been a horrible situation.
When my dad died we had some 'issues'. Nothing as painful as what you explain in your post. Still, grieving is even worse when there is so much anger involved.

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no_hypocrisy Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 02:32 PM
Response to Reply #12
16. Let me put it to you this way.
My last memory of Mom before she went into a coma was her eyes flashing "Fuck you!" to Dad.

My siblings and I have been/are dismayed by the way things played out, but we've moved on. After all, what CAN you do about it?

BTW, in the spirit of "Can You Top This?", guess where Dad decided to bury Mom (again, he didn't tell her in advance)? A military cemetery in Long Island. I'm not kidding. Her plaque has USA (for U.S. Army) on it. Dad even messed up her year of birth. It's been surreal.
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terip64 Donating Member (1000+ posts) Send PM | Profile | Ignore Sat May-05-07 08:46 AM
Response to Reply #16
24. You are so smart to move on but I am sure it hits you at times and you have no control over it.
Edited on Sat May-05-07 08:46 AM by terip64
I know I still gets waves of sadness and even anger and it has been 6 years since my dad died. I can't imagine if it had been my mom, though. My dad didn't what drawer his socks were in so we would of had our hands full if my mom went first. ;) Our family went into a spin afterwards and of course now we still aren't on the best of terms. But what can you do? It was always dysfunctional and in our family my dad kept it all together even though he was the alcoholic who fucked the whole thing up with some help from my enabling mom. He saw the light as he got older but not everyone in the family was able to get over all the bullshit. We all just have to be true to ourselves and take comfort that our parent is beyond all the nonsense and that we aren't continuing the cycle.

Your father is lucky to have you.

Take care

:hug:
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no_hypocrisy Donating Member (1000+ posts) Send PM | Profile | Ignore Sat May-05-07 09:11 AM
Response to Reply #24
25. You know what? I give credit to moving on to my sister. She's the one
who has kept the complex, dysfunctional situation simple.

She says, "Dad is Dad". Similar to "It is what it is."

Dad can drive us all nuts. But we've decided no matter what the past history is, we have at the least to take care of him as the husband of our mother, if not as a modicum of recognition as our father.

And yeah, it hurts. It always will hurt. But it becomes a familiar ache after a while and that's what makes it manageable.

Peace to you too. Keep an open heart and an open mind.

And play the hand you're dealt.
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terip64 Donating Member (1000+ posts) Send PM | Profile | Ignore Sat May-05-07 02:20 PM
Response to Reply #25
26. Thanks, I do the best I can...
I play the role of your sister trying to get my sisters to recognize that my mother is who she is but without my father around to run interference things can get kind of ugly. Really, we are fortunate that things are as good as they are. We can all be in the same room together and even laugh. The hard part is reminding yourself that what is true about my mother is also true about my crazy sisters. They are who they are.

Thanks for the wishes of peace. That really is my goal, peace of mind and no regrets. So far so good. Certainly helps have a great husband and kids. I have spent my whole adult live trying to be 'normal' and it has paid off. It is hard work though. My immediate family is functional and not painful to be around!! We actually enjoy each others' company! Life is good!

Thanks again. I hope your hurt does go away. I think that my hurt was anger that I had to work through. A deep sense of sadness took its place and I think I will just have to deal with that. Sadness isn't as complicated as hurt though. It is a purer emotion that truly comes in waves for me. It doesn't rule me like the hurt did if you know what I mean. I miss my dad and always will. I am so thankful that we worked through so much before he died.
You reminded me how lucky I am for that.

Take care
:hug:
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tg Donating Member (80 posts) Send PM | Profile | Ignore Fri May-04-07 02:03 PM
Response to Original message
11. The way my doctor explained it ...
Fibromyalgia means "muscle pain" and, as a diagnosis, it means they don't know the cause. Most people have different causes and for some people it means hypochondria. Mine turned out to be sleep apnea. -tg
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Donnachaidh Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 02:33 PM
Response to Reply #11
17. that's just it -- mine is not muscle pain
It's nerve damage. Very isolated, very distinct. It doesn't fall under any of the fibromyalgia listings I've fond on the web (WebMD, etc.)

I really do think this guy is classifying me to increase my insurance pay-outs. I think I'm going to call my insurance First.
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Lobster Martini Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 02:31 PM
Response to Original message
15. Quoting the Mayo Clinic
Edited on Fri May-04-07 02:40 PM by Lobster Martini
"...fibromyalgia was known by other names such as fibrositis, chronic muscle pain syndrome, psychogenic rheumatism and tension myalgias."

I am guessing without enough information, but it is possible that your doctor used different terminology for the same condition. I would be inquisitive, but not outraged yet. The best thing to do--as others have said--is to ask for an explanation.

Might be outraged after hearing the explanation, but, optimistically, I'll bet that it's just language. And I'll bet that you have an older doctor.
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Book Lover Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 02:40 PM
Response to Original message
19. Please do not discount clerical error as a possibility here
I agree with everyone else; you must call the office to get the answers you need. But keep in mind that this could be as simple as human error.
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Donnachaidh Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 04:46 PM
Response to Reply #19
22. I'm going to check with my insurance first
To see the dates and charges submitted under this 'diagnosis'. It could very well be some form of error, however, I don't feel that I'll get a truthful answer from this office. I want to see what they have billed for, and how many times, first.
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Book Lover Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-04-07 04:56 PM
Response to Reply #22
23. Smart move, I think
Be as prepared as possible. Best of luck!
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