I don’t know if this is in the right forum. Apologies if it’s not.
I went to a neurologist today. He was a very nice guy and he gave me a much better evaluation (quality-wise) than I thought I’d receive. Afterwards, he set me up with his secretary so that she could make a bunch of appointments for blood work and various tests (including a DNA test for Huntington’s…scary, right? But I don’t think I have it, so no drama there).
Anyway, she had a bunch of paperwork to give me before I could leave. All of the forms had this column called DIAGNOSTICS. Depression was there. OK, I understand that one because I told him I was being treated for it. Movement disorder was there. Fine, that’s why I came to see him. But then there was another diagnosis–one that I shan’t reveal because it is stigmitizing and I don’t want to worry a loved one who might be reading this.
It was a diagnosis that neither the doctor or I had even mentioned. None of my various specialists have mentioned it to me either. I know what the disorder is and know that it isn’t out in left field, given my family history and some of my symptoms. But I’m wondering why the very nice doctor didn’t mention it to me even as a possibility. I mean, we talked about Huntington’s and Wilson’s disease and even PANDAS (a pediatric disorder). But not this.
No, I didn’t ask him about it. He wasn’t around when I was leaving and I didn’t want to ruin the morning by coming across as difficult. So now I’m wondering…do doctors just make up diagnoses sometimes? Kinda just to fill in the blank for insurance purposes? Because that’s the only reason that I can think for why he would diagnose me with this particular psychiatric disorder without mentioning it to me first. But he did have “movement disorder” on there, so I guess that makes that hypothesis kind of stupid.
He even asked me when he first came into the room what I had been diagnosed with. I told him everything I knew and he wrote it all down. So it’s not like he knew anything about me beforehand (that I know of).
I’m not freaking out about this. It’s just not a disorder you’d particularly want to have, if you had to have one :). If it’s in my medical records then I don’t know what that means for me as an individual. If it’s just a place-holder, I’m fine with that. I just want someone to tell me that’s what it probably is. And I’d be curious to know if this happens often so I can be on the look-out for more stealth diagnoses.
Well, without knowing exactly the paperwork or what’s going on, I will note that insurance companies will refuse any testing that’s done with the intent to “rule out” anything, as long as you actually write that phrase “rule out.” They won’t pay. (I work in a medical center, not in billing, but I’ve had the “don’t freaking write ‘rule out’ on anything” lesson drilled into my head.) So I’m wondering if he put that one item in a laundry list of diagnoses so that he could run the test in question and your insurance would actually pay for it.
Something like this happened to me. I had a bunch of tests done and never received the results. I went to a specialist for what turned out to be a related problem and she found it in my records and asked about it. I was shocked that I had not been told of a very scary test result. The specialist was surprised to say the least and said she would look into the problem as well as re-test me.
We came to the conclusion that it was just miscommunication or one of those things that fell through the cracks but I am darn lucky my health did not go downhill.
I always…always…always…get a copy of my test results for everything. And I read through the results, and discuss them with my medically oriented friends.
You are your best medical advocate. Take the job seriously.
-D/a
And so I’ve learned. Hard to believe that I worked in the health insurance industry (albeit the IT end) and still didn’t follow up on this. It was many years ago and I have learned my lesson.
This is just an experienced lay-person’s opinion but your doctor was probably just trying to be thorough like indicated above. I collapsed at work work less than two years ago and ended up in the ICU and critical care unit for two weeks. They didn’t even think I would make it through the first few hours but I am fine now.
The most likely proximate cause was fairly clear but the overall case was not. The basically told my mother to start planning a funeral and yet I started improving after right after I woke up the next day. That triggered a full 6 months of medical tests. (including a Wilson’s disease screening BTW), MRI’s, CAT scans, full-body x-rays and everything else). I was screened for cancer, genetic diseases, diabetes, heart problems, blood problems, metabolic disorders, and much more. The insurance company had to cough up mega-cash for all of that but they didn’t find much that couldn’t be addressed simply. If you looked at my charts from that time, you would see references to all kinds of terrible conditions but they weren’t true.
My doctors told me about much of what they were looking for but I wouldn’t have any way of knowing if they wrote other stuff down too that I never knew about. I wouldn’t worry about it too much. A big reason why health care is so expensive is that it takes a lot of time and money to rule out every possible rare condition in a given patient. You probably don’t have it but they want to cover themselves and give you a better chance if you do have something unusual.
They have to, in order to get insurance companies to pay for stuff.
Don’t sweat it yet. However - if it were me, I’d call the neurologist’s office tomorrow and ask to talk to a nurse and ask them to explain why that particular diagnosis was written down.
It’s probably nothing. Don’t worry about looking difficult, though. This is your health, your body, you are paying them and you have the right to know what’s up.
Another thought - some things sound a lot worse on your chart than they really are. Tests that give false positives…conditions that have a huge range of seriousness. I have notes that would scare me if I didn’t do my homework. My GP knows that I follow up on everything, so he takes the time to explain every little piece in my chart. He appreciates that I take it seriously, and that I won’t over-react to something just because it sounds scary.
Maybe the diagnosis in the OP is something like that - it sounds scary, but isn’t important in the grand scheme of things?
Does this neuro specialize in anything? In the last several years I’ve seen two Neuros (same office, but switched from one to the other for insurance reasons). With both of them, I was seeing them for exactly one thing. Migraines. That’s it. My initial appointments were made because “I have migraines and would like to get a script for Imitrex” When I spoke with the nurses before I met with the doctors for the first appointment, I explained to both of them that I was switching from one doc to the other (for the second doc) and from my primary doc to this one (for the first one) since the primary is way across town and I was really just looking for a script for Imitrex. When the doc came in, he went through his all the normal tests. With both docs, I noticed that they did, from what I could tell based on what I read, some preliminary tests for MS. No mention of it outloud, but poking my feet with a safety pin and asking me to walk up and down a hallway IME aren’t migraine tests. Anyways, what I’m getting at is, this Neuro office specializes in MS, so I assume some basic MS tests are done on virtually every patient that walks through their doors. Does your Neuro specialize in something that maybe they test everyone for?
Re-reading your post, I see it seems you weren’t just tested for something but think you were actually diagnosed with something. If that’s the case, just give them a quick call in the morning and ask for some clarification. If it’s on paperwork in your hand, I wouldn’t hesitate to call and ask. If it’s written on something that you didn’t actually take home with you, I’d still call but be a bit less worried. Might be something as benign as “Oh, sometimes the doctor makes little notes to himself on the chart as he’s talking to a patient. If he didn’t bring it up to you and it’s not on anything you took up with you, I wouldn’t worry about it” or “That was just a note he made to himself so he could remember to ask you some other questions, it wasn’t a diagnosis and it’s not in your chart, you don’t have anything to worry about”
But, like I said, give them a call, all we can do is guess.
For the record, that kind of stuff is just part of a routine neurologic exam which any decent neurologist ought to do on every patient they see.
They probably weren’t thinking you had MS specifically, but it’s just part of the process of ruling out any other neurologic explanation for a headache.
Makes sense. And both of these docs routinely win awards in their field and have articles written about them. So, yeah, they qualify as ‘decent neurologists’. I guess next time I see them, I’ll just chalk it up to just part of their job. It was just so different from going to my GP and saying “I get migraines…need imitrex” and him saying “Okay, here”
But, to get back to the OP, let’s say I walked with a slight limp, he might make a little note on my chart somewhere. Later on in the exam he may see that note, follow up on it, find out I bumped my knee or had an ingrown nail and move on. Sure, the note is still there, but it never turned into a diagnosis, it’s just a little scribble that’s more or less meaningless at this point.
The disorder listed under DIAGNOSTICS is, as far as I know, not at all related to any of the tests that I have to go through in the next few weeks. The literature shows that people with this disorder have some of the motor symptoms that I displayed, but none of the tests are specific enough to rule out this condition.
I’m guessing the doc sized me up, absorbed the info in my notes, and came up with a diagnosis that “felt” right, even though the disorder is not a neurological one. Sucks to have it on my records (it is printed on all of my paperwork, so it’s not just a note scribbled somewhere), but I guess that’ just how it is sometimes.
Fortunately, the office will be sending my records to the other practioners that I have appointments with next week. So I’ll be able to talk about it with them.
Man, I never thought I’d have go to see so many doctors in my life!
Ask the original doctor’s office about it. It’s perfectly OK to tell them that this puzzled/confused/disturbed you a bit, and you were wondering where that came from.
IANAD but I agree that it might merely mean they are testing to rule out whatever that condition is, and that it does not indicate that you have been diagnosed with it. So try not to worry too much but do ask your neurologist what it means.
It could also be in error. It is never inappropriate to communicate with your doctor when something doesn’t make sense to you, especially if you have a complicated medical history.
Could be something like that. I went through some blood testing 20ish years back for possible Cushing’s (I’d developed a “buffalo hump” which can be a sign of that) and I think the paperwork said “possible Cushing’s” or something similar.
I would definitely place a call to the doctor and ask him/her to phone you back about that diagnosis at least to clarify whether it’s a cover-your-ass thing for insurance purposes. And if it’s more than that, you need to schedule a followup appointment to say “Dude - WTF???”.
Then we Dopers can start to speculate on whatever wild-ass conditions we like, the more absurd the better. Though we already know (from House MD) that it’s not paraneoplastic syndrome, or pheochromocytoma, or several other diagnoses which get ruled out Every. Single. Episode.
Every neurologist I’ve visited has done the basic tests for neuropathy / gait and like you, I was never seeking anything of the sort. I think it’s sort of like the blood-pressure/weight routine stuff you get at the primary care doc. I’d bet the docs also did a test with a tuning fork.
They do test to rule out stuff however unlikely. For example, I know for sure that I don’t have syphilis, as a result! (I actually displayed minor neuropathy at that last neuro visit, the doc ordered some blood tests to catch any treatable causes… and syphilis is apparently one such cause). Of course, nowhere did I have a diagnosis of “rule out syphilis”, nor did the doctor TELL me he was testing for that - probably figured I’d freak out and be OFFENDED rather than bust a gut laughing.
The doctor actually called me today. He had another hypothesis and another test for me to “sign up for” (for lack of a better word). I guess it’s good he’s thinking about my case so hard, but my goodness! Copays aren’t cheap, and I can’t afford to be “Mystery Diagnosis” for every doctor in town :). Not only do I have to get my eyes checked for Kayser-Fletcher rings, but I need an ultrasound on my ovaries! Two weeks ago I was depressed 'cuz my shrink said my problems were all psychogenic. Now I have a guy who’s on the opposite extreme!
Anyway, I summoned up the courage and asked what the deal was about the weird diagnosis. And he told me it had already been in my electronic record…that he had not put it there. And to my relief and surprise, he told me he had deleted it after I had left his office. He suspects that the previous neurologist who’d seen me had scribbled some cryptic notes, and whoever had transcribed them had interpreted them incorrectly. So it was all just a mistake. Yay.
By the way, I’ve been to three neurologists in my life. They all did things a little differently. I’m guessing there is the standard stuff they make everyone do (like testing your reflexes, testing your sensitivities to touch, the push-against-my-hands bit, etc.) But two doctors had me do tandem gait tests; the other didn’t. One had me do the Romberg test; the other two didn’t. Two had me figure out what letters they were tracing on my hands and feet; the other didn’t. So I figure there is some discretion in what the doctor will have you do, based on their level of expertise and schedule. The guy I saw yesterday didn’t make do the Romberg or test my tandem gait (because those are the two I routinely fail). But I suspect his report will be more thorough than the others because he asked more questions.
