What kind of lawyer to obtain my own medical record?
August 31, 2017 3:04 PM   Subscribe

I got an EEG done by a neurofeedback place that told me I had brain damage, and that it sounded like some neural events I've had in the past year are seizures. I looked into it and it does seem like they're seizures. I had a clean MRI of my brain in 2015 (was having nerve issues at the time) so I need the EEG results to give to my neurologist in order to be taken seriously; my GP agrees this is very important and I should not go to the neurologist without the images. It has now been almost three months and the neurofeedback place will not give me my EEG results, despite my telling them the seizures (or whatever they are) have begun recurring in the past few weeks and I REALLY need the images. I have been sitting on my neurologist referral worried that something bad is going to happen to me. What kind of lawyer do I contact?

I went to a private neurofeedback practice headed by a doctor and had an EEG done. (Insurance was not involved; I don't think it's something insurance really covers.) A week later, I was shown a very simple three page PDF file which included the images of my brain. These images showed brain damage in the same area of my head that hurts when I've had these weird neural events that the doctor said sounded like seizures. I always thought seizures meant losing consciousness and violently convulsing, but after looking into it and learning about other kinds of seizures, my events do indeed sound like textbook seizures.

When I asked for this file to show my neurologist, I was told that I could have it the next day. That didn't happen. Then I was told it took a while to write up a report to go along with the images. At first I didn't understand why that was necessary, but as it turns out, I was able to indepently confirm many neurologists actually don't know how to read an EEG. I figured okay, if it's important to this guy to write something up explaining the images, then fine, it must be important.

After waiting weeks I prodded them again, saying could I PLEASE just have the images (since clearly this guy was not going to get around to it in any reasonable timeframe and I was deeply concerned after learning I had brain damage and sporadic seizures), my argument being that I didn't think any neurologist would just look at it and diagnose anything based on the EEG, but rather, it would just be reason enough to do another MRI or whatever she felt was appropriate. I made very clear that's all I wanted: just something to show her so she understood something was definitely up with my brain since my last MRI. I am concerned for other reasons too, namely that I read that things like tumors or blood clots can sometimes look similar to brain damage on EEGs, and those things can cause seizures as well.

This has now gone on for three months and the neurofeedback place is no longer responding to me despite the fact that I have been patient and polite. I sent them a letter today that was no longer patient and told them I was getting a lawyer.

But what kind of lawyer do I contact? Every search I can come up with has been very muddy since most results are about misuse of medical records, not cases where a doctor simply would not release someone's medical records to them. It seems like a simple enough thing to get a lawyer to send them a threatening letter, but I can't figure out who to contact.

This whole situation has been incredibly distressing and I feel like I've been treated in a very inhumane way just because I didn't immediately commit to an expensive neurofeedback package, instead wanting to actually find out the cause of my brain damage. I also wonder if it's a scam because at the consultation the neurofeedback doctor kept saying maybe I had fallen out of bed and hit my head and didn't remember it, but the way my bed is arranged it's not possible, plus my husband would have heard me fall. I have absolutely not hit my head at any time in the past decade or more, and most of my cognitive difficulties have set in the past year. I don't know, though, because as I said the area with damage is the area I get a very weird headache in before the onset of the maybe-seizures. If anyone thinks I should get legal counsel along the lines of this whole thing being a scam, I am open to hearing about it.

Also, if anyone has been through anything similar before and can tell me how much it cost you to get your record released, I would appreciate it. Thanks.
posted by anonymous to Law & Government (45 answers total) 4 users marked this as a favorite
I would file a complaint with the medical board in your state, or threaten to do so if he doesn't cough up the records within 3 days.
posted by AFABulous at 3:10 PM on August 31 [7 favorites]

Wait, have you gone to the place in person and told them you're not leaving without it? That's the first step, if you haven't.

If you have, yeah, I don't think you need a lawyer, you need a complaint to the licensing board.
posted by fingersandtoes at 3:13 PM on August 31 [4 favorites]

You'll get better answers if you can say where this is. In many jurisdictions, you have a right to these records and just getting a lawyer (any lawyer) to write the appropriate lawyer will work. (So will writing a letter yourself but most consumers are not very good at writing legal threats.)
posted by DarlingBri at 3:17 PM on August 31

When I tried to get medical records, I had to deal with their concerns about security and transmittal, e.g., how do they know it was really me who made the request and signed the permission page? is my fax machine secure? (Well, no, actually, it isn't.) It got ridiculous and time was ticking. (I was very pregnant and needed the records to transfer to an OB who was covered by my new insurance.)

What I did was take the afternoon off work and stage a sit-in in their office until they agreed to make the photocopies. I was there for probably two to three hours between waiting in the initial line, them figuring out which staff member had been [not] "handling the request," them finding the files I needed, and finally making the copies. Bring several methods of payment just in case.
posted by slidell at 3:20 PM on August 31 [2 favorites]

Did you pay with credit card by any chance? Maybe you can threaten a chargeback.
posted by vignettist at 3:23 PM on August 31

"I went to a private neurofeedback practice headed by a doctor and had an EEG done. (Insurance was not involved; I don't think it's something insurance really covers.)"

What exactly is a "neurofeedback practice"? I don't really understand why your neurologist can't order an EEG and give you a referral to a reputable place that does EEGs and that takes your insurance. (Why would this not be covered by insurance??)

Once the test is done, the report should be sent to your neurologist as a matter of course, and in a short time period.

But if you don't want to start fresh, and you just want to get the practitioner who did the EEG to send a report to your neurologist, then other commenters are correct -- you don't need a lawyer, you just need to file a complaint with the appropriate licensing authority. But if you want to use a lawyer, really, any lawyer should be able to handle this with a simple demand letter.
posted by merejane at 3:35 PM on August 31 [12 favorites]

Yeah. I requested some paper records from about a decade ago recently: I had to go physically sit in their office while they made them, otherwise it was going to be some stupid-long timeframe for them to mail them to me.

But do indeed report them to the medical board, and your state might have a separate records keeping board.
posted by furnace.heart at 3:37 PM on August 31 [1 favorite]

I'd ask your GP to request them. They might pay mpre/better attention to another doctor.
posted by bleep at 3:38 PM on August 31 [3 favorites]

You should also try to make that neurologist appt now just in case it takes awhile to get an appointment, and maybe they can help you get the images. They might not even want to see them, sometimes doctors are like that.
posted by bleep at 3:40 PM on August 31 [2 favorites]

I believe there are any number of EEG operations operating without any sort of oversight or licensing authority: Basically, anyone willing to shell out some bucks for a device and the software can set up shop, and many have.

It's quite likely that the EEG place is trying hard to not be exposed as quacks.
posted by straw at 3:45 PM on August 31 [18 favorites]

"I asked." "I was told." "I prodded." "I made very clear."

I got all the way to the end of your story before you mentioned putting something in writing ("today"). Now, those are nonspecific verbs so maybe you have indeed been doing things in writing this whole time—but speaking as a lawyer who often turns away clients (who are eager to give me money) because they just don't need legal services, my first question is often: "Have you been communicating in writing, or has everything been over the telephone?"

I use the telephone sometimes. If there's an amicable relationship and I'm raising a new issue and I have no reason to think there'll be any problem, then sure, I'll pick up the phone. But as soon as I get any inkling there might be a dispute...? No more phone calls. I'll tell them flat-out, "Please do not contact me via telephone. To avoid misunderstandings, I prefer to correspond in writing."

Do you want the best general-application advice I can give people, speaking as a lawyer who specializes in litigation—meaning, anything that has been so badly screwed-up that someone is now resorting to a lawsuit?
  • Use postal mail.
  • Save scanned copies of everything you send and receive.
  • When appropriate, enclose copies of prior correspondence.
Follow these rules, and you'll avoid a lot of problems—or at least be in a much, much better position if you ultimately need to contemplate litigation.

As a general rule, I give people thirty days to reply to correspondence. If I haven't gotten a reply after thirty days, then I'll follow up with a second letter: "I am writing to follow up on my letter dated July 32 (copy enclosed)..." Too often the first letter falls through some crack, especially with large companies; but by the time we reach letter #3—"I have not received any reply to my letters dated February 30 and March 32 (copies enclosed)"—all but the absolute worst companies/lawyers will snap to attention with an apology and reply.

Also, I escalate. If I didn't get a reply when I contacted a company's generic address, then I'll send letter #2 or #3 (depending on the situation) in multiple copies addressed to general counsel, the CEO, the COO, the VP of customer relations, the VP of North American operations, and anybody else I can identify who might be relevant. It's not an immediate tactic and I don't overuse it, but it always works.

But what kind of lawyer do I contact?

Your local bar association can help you with this. Do a quick Google search to identify what organization is local to you, and ask for a referral. Many bar associations offer free or cheap ($25–50) half-hour consultations to discuss your issue. Expect that a lawyer may tell you, "Hiring a lawyer just to send a letter may cost you more than you're prepared to spend on this." So do some thinking in advance about what you're willing to invest in terms of dollars versus your own time and elbow grease. Good luck!
posted by cribcage at 4:03 PM on August 31 [20 favorites]

I think you should go to the neurologist without delay, and explain your symptoms to them. I don't think they will need the EEG to decide that this needs further investigation, based on what you've put here. (I am not a doctor.)

(It sounds to me like what you had was a "QEEG", which is not entirely mainstream and apparently has a high risk of "false-positive" diagnosis, so try not to jump to catastrophic conclusions until a real doctor has had a chance to have a proper look.)
posted by richb at 4:03 PM on August 31 [14 favorites]

If you are in the US, they are required to give you your records within 30 days under HIPAA law. If you have proof that you made the request more than 30 days ago (like a registered letter?) this seems like a slam dunk. Any lawyer could handle it, or you could just go there and wave the text of the law in their faces until they comply.

Reporting to the medical board is all well and good, but you need the records NOW and I don't think that would get you what you need right away.
posted by nirblegee at 4:07 PM on August 31 [2 favorites]

I'm another person who staged a "sit in" to get records. Took them half an hour once I said I wasn't leaving unless they carried me out, though they made a bunch of snide remarks.
posted by FencingGal at 4:10 PM on August 31 [5 favorites]

You can file a HIPAA Privacy Rule Complaint with the U.S. Department of Health and Human Services (HHS) Office for Civil Rights here: https://www.hhs.gov/hipaa/filing-a-complaint/index.html.
posted by nirblegee at 4:14 PM on August 31 [1 favorite]

(I am not a medical doctor. ) Assuming you have symptoms, and a referral from your GP, please go straight to the neurologist. It doesn't matter if you had a clear MRI two years ago if you are having symptoms now. Stroke victims can have clean MRIs just before they have strokes.

My very strong suspicion is that you're not getting the records from the neurofeedback place because this was at best a non-medical set up (e.g. not clinical data), and at worst a scam. First, an EEG can not give you "pictures of your brain". I totally understand that they may have just described some EEG maps to you as "pictures of your brain", but EEG does not take anatomical pictures. If you saw a picture of anything that looked like an actual brain in their report, then the place was making things up.

Neurologists are experts, and if the neurofeedback place was writing up some kind of novice-friendly report, they wouldn't give it much weight anyway. My guess is that for something related to physical damage (e.g. clot, tumor, etc.) a neurologist would order a CT, or possibly an MRI, since those methods do image the brain tissue itself. Again, I am not a medical doctor, but EEGs record electrical activity from the brain as its happening - they are best at detecting seizures that occur while you're being recorded.

I'm so sorry you're dealing with this anxiety and these issues, and I wish you all the luck in getting good treatment.
posted by BlueBlueElectricBlue at 4:44 PM on August 31 [24 favorites]

From the OP:
Thanks for the advice so far. In no particular order:

- This is in Los Angeles.

- Apparently I can't complain to the medical board because while the guy who won't give me a copy of my EEG is technically a doctor, he's a PhD, not an MD, so there is no license to put on the form. He's a neuroscience researcher and lecturer at a university here.

That's a reason why I'm guessing I will need a lawyer to get him to cough up the images: the legality might be more fuzzy and a lawyer might need to be creative if there's some caveat that he doesn't technically have to give them to me like most doctors would have to, or something. I don't really know what to do in a situation like this, which is why I'm asking.

I cannot emphasize how desperate I am. I have no hope of getting any useful data from any better source (which I get into below) and it could be a tumor or blood clot causing my seizures going untreated while I wait around for images. I have no idea if I'm going to suddenly have another, much worse seizure at any time. So even if there's some weird technicality where he doesn't have to give them to me, I need someone to convince him to give them to me. I feel like some kind of lawyer would be able to freak him out and decide it's not worth withholding them.

- Similarly, there's not, like, a records department I can go sit at. It's his neurofeedback practice, which is just a few rooms and very few employees. If he won't give my images to me, he won't give them to me. There's not higher authorities or unrelated authorities I can ask for the records, it's just him.

- About why my neurologist didn't do an EEG: My neurologist did an MRI in 2015 as I stated, which is a lot more useful and detailed than an EEG. We hit a dead end when it came up clear but my brain issues continued to worsen. I began having the seizure-like issues at the end of 2016 but didn't recognize them as such for the reasons I stated. I have been chronically ill my whole life and my MRI had been clear so I figured the seizures were just other health issues messing with me, and that my deteriorating cognitive issues were something that would have to be addressed via other means. I also know my neurologist's personality and knew she would just tell me my MRI was already shown to be clear if I went to her again.

That is why I looked into neurofeedback; having exhausted all other options, I thought maybe my cognition had gotten thrown out of whack by the traumatic couple of years I'd had and that I just needed to retrain my brain. (Indeed, the EEG showed pretty severe PTSD too, which was not even something I had brought up to anyone working at the neurofeedback place.)

When I got neurofeedback I was not expecting to be told I had brain damage. When I was told I had brain damage, I described the handful of events I'd had with a bursting sort of pain in that part of my head which brought on Tourette's-like symptoms and strange sensations on that side of my face and some other symptoms, and he told me those sounded like seizures. This checks out, as do a bunch of other factors that trigger seizures which seemed to trigger these events.

It's also my understanding that neurologists don't usually do EEGs -- most of them don't know how to administer or read them very well, from what I've read -- and prefer to do MRIs.

To reiterate: the point of getting the images is so I can get my neurologist to do another MRI (or whatever you do in this scenario). I do not want my neurologist to do an EEG because that would not tell me anything more useful than an MRI or the EEG that was already done. Nor would my neurologist have any reason to give me an EEG. I did not get an EEG done myself because it was any better than MRI, nor because I was trying to diagnose a medical problem. I got an EEG done because it's the basis for neurofeedback. I need an MRI because the EEG does not give any clue to the nature or cause of the brain damage the EEG revealed, and it does not give information that could be helpful in determining why I'm having seizures or what to do about them.

I would really prefer if this didn't get derailed into a discussion of why didn't I this or that, because I'm just at the mercy of the healthcare system and it's pretty much failed me my entire life. It would be fantastic if I could just go to my neurologist and tell her to look again and get all these tests done because I have these seizure symptoms, but she's not that kind of person; as I stated, even my GP knows she will not take me seriously without the EEG images that I got elsewhere. Once my MRI turned up clear she was done with me despite everything that was clearly wrong, which is why I had to look outside to fix my problems to begin with. I can't just go to another neurologist, as nice as it would be to have that option.

So despite whatever ideals people may wish were the case, my reality is this: I need these EEG images to convince her that something is actually wrong *in my brain* and I'm not just crazy or exaggerating or mistaken or whatever reason she may come up with to dismiss me because she just wants people out of her office ASAP. I need solid proof that she should look again because I have been having seizure symptoms since my last MRI that corresponded with a lot of deterioration and bizarre pains in the area of the alleged brain damage. I now *have* that solid proof, which I paid for, but this guy is refusing to give it to me.

My question is about how to get that proof from him; it's stressful to have to explain details of why people don't have the options others imagine them to have in our healthcare system. Thanks.
posted by restless_nomad at 4:48 PM on August 31 [2 favorites]

It has been my experience that doctors either charge exorbitant photocopying fees or simply refuse to give records to patients, but send them to other doctors Without question or charge. I don't understand why your GP or your neurologist wouldn't be the ones requesting the transfer of these records. That has invariably been the procedure in my case.
posted by The Underpants Monster at 5:01 PM on August 31 [1 favorite]

I should have added that if your GP or neurologist haven't requested these records before, it might be a good idea to ask them to get the records from the neurofeedback practice for you.
posted by The Underpants Monster at 5:04 PM on August 31 [1 favorite]

I suspect the Neurologist will glance at any report the Neurofeedback place gives you, and toss in the trash. The neurologist will likely examine you and order new tests. The Neurofeedback place was likely trying to sell you additional services.
posted by tman99 at 5:07 PM on August 31 [17 favorites]

He's a neuroscience researcher and lecturer at a university here.

Were your tests done using university equipment, on campus, or in his role as a researcher or lecturer? In that case, you need to talk to the university's Institutional Review Board (IRB). He should have already cleared his research with them and most likely has a protocol in place about participants being able to obtain copies of their own data. The IRB are the folks that govern ethics in research and will be able to put pressure on him to release your records to you.

If he's moonlighting and your tests were not done in association with the university in any capacity, then things get trickier. I will let other MeFites speak to that part.
posted by WidgetAlley at 5:21 PM on August 31 [9 favorites]

Similarly, there's not, like, a records department I can go sit at. It's his neurofeedback practice, which is just a few rooms and very few employees. If he won't give my images to me, he won't give them to me.

My doctor's offices have never had records departments (or billing departments) either. I would go to the office and demand what I need at the reception desk where they handle everything else. Tell them you aren't leaving until you get a copy of your results. It's the only way to resolve some issues with billing/insurance or records, since they can ignore you via the phone. They might make you pay a copying fee or make you sign a release, but they should be able to do it.

Also, maybe I somehow missed this, but is there any reason you can't just get an EEG from a reputable doctor through insurance? If you still have the same issues, surely another EEG would show it and you a) wouldn't have to go through this b) might trust the results more since this professor you went to isn't an actual doctor equipped to diagnose people.
posted by AppleTurnover at 5:23 PM on August 31 [4 favorites]

Contact his department chair, the dean, and the president of his university about his unprofessional behavior. You could send a letter to the PhD first explaining that you are intending to do the above but be careful how you word it so it cannot be misconstrued as a threat.
posted by teamnap at 5:23 PM on August 31 [3 favorites]

"A week later, I was shown a very simple three page PDF file which included the images of my brain. These images showed brain damage in the same area of my head that hurts when I've had these weird neural events that the doctor said sounded like seizures."


"Indeed, the EEG showed pretty severe PTSD too"

tell me that you did not have an EEG. I'm not sure what you did have, but I'm fairly certain it will not be useful to your neurologist.
posted by i_am_a_fiesta at 5:30 PM on August 31 [31 favorites]

OK, so. I'm a neurologist, not your neurologist, not in California, not medical advice, etc etc.

An EEG and an MRI are separate, complementary things. The MRI tells us about structure, the EEG tells us about function. It's possible for one to be normal and the other to be abnormal. Or both might be abnormal. Or both might be normal! Also, if your normal MRI predates these events, it might be a nice baseline, but doesn't tell us anything about the structure of your brain today.

You could try asking your PCP or neurologist's office to intercede on your behalf. Sometimes offices, especially the more old-school offices, are most responsive to fellow professionals. Which sucks, but there it is.

Though to be honest, as tman99 says, as a neurologist I would be unlikely to be interested in the report of an unlicensed, unregulated "neurofeedback" place. Please don't feel like you need this report to make her take you seriously, because she almost certainly would not take the report seriously. As a example, there is no EEG signature for severe PTSD, which this neurofeedback person apparently diagnosed. The term for that is "practicing medicine without a license" which is a criminal offense in California. So to actually answer your question, you need a criminal prosecutor.
posted by basalganglia at 5:33 PM on August 31 [70 favorites]

Go to the office where he practices. Demand your records. Do not leave until you have them. If there are other people there so much the better.
posted by fingersandtoes at 5:33 PM on August 31 [4 favorites]

I will take you at your word that you can't change neurologists. Will your GP not help you deal with that problem? Your symptoms seem worth an ER visit to me. Is that an option next time they occur? If your face feels strange, you could say you're afraid you're having a stroke. I would not even mention the neurofeedback place as doctors are unlikely to take it seriously.

I'm sorry this is happening to you.
posted by FencingGal at 5:44 PM on August 31 [3 favorites]

(Indeed, the EEG showed pretty severe PTSD too, which was not even something I had brought up to anyone working at the neurofeedback place.)

This is not possible. These are scammers. They are scamming you. They don't want to give you the report because then (a) you'll take it and pay for follow-up with someone who is not them and (b) the actual doctors with whom you follow up will tell you that their "EEG" is a fake. Insurance wouldn't pay for it because insurance companies are uninterested in lighting their money on fire. Write the report off, because it's horse manure. It's not proof of anything. It was done to scare you into paying them a lot of money. They just happened to overshoot the target a bit.

I say this with your best interests at heart: I understand that actual medicine is not doing right by you, but you don't have the knowledge or judgment right now to engage with alternative medicine without getting totally ripped off. Stop trying. If you don't stop, you're going to get ripped off some more, quite possibly by these same people. Go back to your doctor and lay out your worsening symptoms. If she won't act, then go to the ER the next time you have those seizure-like symptoms. That's where you need to be putting your limited energy while you're not feeling well. In my opinion, every minute you spend worrying about trying to get anything out of your scammers is a minute wasted. They have nothing to give you. The cake is a lie. I certainly can't say your brain is fine, but whatever they told you about what's wrong isn't true.
posted by praemunire at 5:54 PM on August 31 [68 favorites]

I feel like some kind of lawyer would be able to freak him out and decide it's not worth withholding them.

That may indeed be true. And based on what you've said here—assuming, for sake of this AskMe, that what you've said is 100 percent accurate and you can substantiate every detail—I would imagine you won't have much trouble finding a lawyer who is willing to send a simple demand letter, or maybe even make a phone call, provided that you're willing to pay his or her fee. As you have been advised above, you can find a lawyer with the appropriate skills in your jurisdiction by contacting a local bar association (like the Los Angeles County Bar Association, or by contacting one of these organizations identified by the California State Bar) and briefly explaining your needs. Bar referral services are usually very experienced in routing requests appropriately.

So despite whatever ideals people may wish were the case, my reality is this: I need these EEG images... My question is about how to get [them] from him...

I think most people here understand that. In turn, you need to understand that if we accept your premise that a medical service provider is wrongfully refusing to turn over records, then just like any situation where someone is wrongfully withholding your personal property: (1) you almost certainly have recourse and you will almost certainly be able to get the records (assuming they exist)...but (2) exercising such recourse will almost certainly take some time and, if you want a lawyer's help, may also cost you money. Short of staging a sit-in and hoping the staff doesn't physically eject you, you may not have an option that results in you having these records in-hand tomorrow. I think that's why people are suggesting that you explore alternatives while you get the records, since you've indicated some urgency.

I understand your frustration at feeling that people are questioning your premises and speculating about wider issues than your narrow question. But respectfully, I think those people are trying in good faith to help you—and more to the point, I think your narrower question has already been answered as best it can be.
posted by cribcage at 5:59 PM on August 31 [5 favorites]

I very much empathize with your sense of desperation. I understand feeling invalidated and dismissed as a patient. But as a MeFite neurologist (and others) have said, this report will more than likely not make the case you need it to make.

In my system, what you'd need is a GP who's in your corner - one who's willing to back you up and fight to get you seen, by the neurologist you saw before, or another one. If it's not this GP, you need another... Going to the ER in the moment is probably a good idea, too...

I'm so sorry it's like this. I hope you have good emotional support.
posted by cotton dress sock at 6:10 PM on August 31 [2 favorites]

This is not possible. These are scammers. They are scamming you.

So, I'm not going to link here because I'm not sure it's going to really help the OP, but given the information in this thread it's pretty easy to identify what organization this probably is, and I would tend to agree with this assessment -- they are at best extremely dodgy. (Credentials: I'm a cognitive science professor, albeit one who only occasionally deals with brain imaging). They certainly aren't supposed to be diagnosing anything, let alone PTSD, and the use of qeeg (which is in fact what this organization uses) is pretty dubious for this sort of diagnosis in any case. They do emphasize in their promotional material, however, that PTSD is something that neurofeedback might be able to treat, so there is definitely an incentive to diagnose that. Basically my read on this organization is, people trying to (unethically, IMHO, given the actual research on this) cash in on the brain training craze, with no medical professionals involved.

OP, I understand that you feel desperate. But I unfortunately don't think you can fully rely on anything diagnosis-like that these people told you. The absolute best case scenario is that the PhD noticed something off in the qeeg results, and tried to inform you of this -- not as a diagnosis, but to indicate that you should get it checked out -- but qeeg as a method isn't accepted or anywhere close to standard, largely because (as I understand it) no one really knows how to interpret it. I think your most likely outcome on bringing some qeeg data to a MD neurologist is a look of blank incomprehension, followed by a google search that will lead to some skepticism. I think the advice above on going back to your neurologist / finding another is what will work best. 2015 was quite a while ago at this point.
posted by advil at 6:37 PM on August 31 [26 favorites]

I'm a PhD neuroscientist. I undersign what basalganglia and praemunire have said: there is no such thing as a sign or signature of PTSD in an EEG recording. There is very little if anything at all, and by far most likely absolutely nothing, that will be of interest or information to a medical professional from those recordings. They will not be interested in the report from a non-MD, who cannot diagnose.

You need to focus on describing and calling attention to your new symptoms for your GP and your neurologist. If you find yourself having a seizure, please go to the ER. Pursuing this EEG is a waste of energy that you very much need to direct towards real care.
posted by Dashy at 6:46 PM on August 31 [30 favorites]

Even setting aside the dubiousness of qEEG, a single session "spot" EEG is generally inadequate to diagnose epileptic seizures. The standard for diagnosis that I at least am familiar with is a video EEG, during which you stay at a hospital for at least 24 hours and are continuously on EEG monitoring while also being observed on video to see if any physical seizure-like activity is happening. (IAAMD, but am not a neurologist)
posted by demons in the base at 7:17 PM on August 31 [3 favorites]

You paid for quackery, is my suspicion too. I suspect there might not even be an actual EEG to give you, and what they told you sounds very strange and quacky on its face. Just cut your losses and go see a real neurologist. Of an EEG is indicated there is no harm in doing it again, and insurance should pay for it if a neurologist orders it.
posted by spitbull at 8:48 PM on August 31 [2 favorites]

Yah I just did some digging, and from what I can tell "neurofeedback" is mostly quackery, and it is very unlikely that whatever kind of "doctor" ordered or read your "EEG" has any business diagnosing "brain damage" (from what? Have you had any major head injuries?) without a full neurological workup. Ditch these people and start afresh. It isn't worth the effort.
posted by spitbull at 8:54 PM on August 31 [2 favorites]

One final thought. I am not a (medical) doctor but I have experience dealing with seizure disorders in close relatives. It is my understanding that an EEG would only be useful if it captures seizure activity while it's happening. It's not a direct image of the brain.

Your GP sounds odd too. Why wouldn't a neurologist take you seriously if you came in complaining of seizure-like symptoms? And why would she rely on an EEG made by someone else when she will want to give you a full workup? And why do you have to convince a neurologist to accept your self-diagnosis or that of a likely quack? You go to a doctor with symptoms. It's their job to diagnose. You will just make yourself nuts poring over web pages with the symptoms of diffferent seizure disorders and going to quack clinics.

If you have to convince a doctor to take you seriously, you need a better doctor. An EEG is a trivial issue.
posted by spitbull at 9:05 PM on August 31 [7 favorites]

Why wouldn't a neurologist take you seriously if you came in complaining of seizure-like symptoms?

Sexism (even if the dr is female), classism, racism; burnout, and/or entrenched cynicism re patient motivation [eg viz a viz potential disability or insurance claims], vs. confidence in colleagues' past findings and hypotheses; concerns about liability; personality quirk; dismissal of subjective report of symptoms given a clean MRI; some or all of the above, take your pick...

If you have to convince a doctor to take you seriously, you need a better doctor.

I said this too, and it's true... but I think it's important for those of us answering to remember that OP's been trying to get some help for complex issues for a long time. Impossible to approach this without frustration and resentment, along with fear... So, of course I agree, find a doctor who'll help - but maybe you'd benefit from an advocate to support you in that search as well (whether that's a friend or a professional).
posted by cotton dress sock at 9:48 PM on August 31 [11 favorites]

I make no comment on the merits of an EEG. I don't even know what a frigging EEG is. But, to answer your question, your leverage is in his reputation. You want to threaten his reputation as a reputable neuroscientist or whatever he is. Your leverage is also with his university's reputation. Threaten to discuss this with the appropriate person at the University.

Also, assuming what he told you is true, then you cannot afford to wait for the results to be sent. You need to be seen ASAP by a doctor. I am telling you this for your health, but also to threaten that his delay in giving you a copy of the records could result in damage to your health and a big old fat lawsuit. Threaten his pocket and his reputation in one shot.
posted by AugustWest at 10:06 PM on August 31

You mention your neurologist's personality a few times, so maybe this is relevant: a lot of doctors really hate it when patients come to them and ask for specific tests or treatments, and will automatically take the patients less seriously as a result. (It absolutely shouldn't be so, imo, but it is.) With doctors like that, I've gotten much better results by trying to let them feel like I've come in with no ideas at all. So I describe the symptoms as carefully but non-clinically as I can, like a person who's never googled in their life. Focus on pain and feelings rather than "I know this could lead to X", and stress how they're really serious and you can't go on this way. Let them offer ways forward, and make follow-up appointments right away in case those ways forward are crap.

That said, this is considerably more annoying than just going to a doctor who will answer your concerns seriously and actually explain why they disagree with whatever your conclusions are. It's also always possible that your neurologist is just not very good. I really think you need to find a way to get a second opinion from a neurologist; even if there's nobody nearby, maybe you can travel to one (it's better than spending money on unlicensed quacks) and insurance should cover a second opinion. In fact, if you can afford it, you could try to see another neurologist privately. And as others have said, your GP should also be able to order various tests for you (and if your GP is saying "I truly think you should have this test but we all know your neurologist won't be interested" - why are they not advocating for you with your neurologist?)
posted by trig at 10:43 PM on August 31 [5 favorites]

These two words alone are a problem: medical records

I am not a lawyer, just a person who took a health law class, but: Just because they used an EEG does not make these medical records. Practitioners of "alternative medicine" or other such variants are often NOT covered by HIPAA. They are not medical providers just because they use jargon that sounds medical, and their records are not necessarily medical records, and you don't necessarily have the same rights and protections. Take anything from this sort of source with a giant grain of salt.

A bigger issue with your response: Something getting categorized as a psychiatric problem does not make it less real or less worthy of care or somehow your fault. There is no such thing as "just crazy"--"crazy" is a first-class citizen in the world of health care and most "crazy" can be appropriately managed or at least mitigated.

You do not know this is a neurological issue at this stage. You know it's an issue. If I went by my current usual spectrum of symptoms, I'd think I had a heart condition and not an anxiety problem, and I even wind up taking a medication intended for heart problems for it, but... as prescribed by a psychiatrist. Brains and bodies are weird and how stuff gets divvied up in treatment among various practitioners is weirder. Because it all relates, even if it is actually neurological, talking to a psychiatrist and ruling out some things might be very productive for your care.
posted by Sequence at 12:23 AM on September 1 [7 favorites]


OP -- as I understand her -- has not yet even seen a proper neurologist. The doctor standing in her way is apparently her GP, since she needs a referral. That GP, according to OP, is apparently actively recommending OP obtain her EEGs from a quack clinic that almost certainly misdiagnosed "brian damage" (a term neurologists don't really use except for TBI). No good neurologist is going to even want, let alone need, these BS guys' EEG.

OP's GP is her obstacle and is either being an idiot or has already decided OP has a psychosomatic condition and a conversion disorder.

There are some aspects of OP's description that could lead some docs in that direction, but the only way to *rule out* actual electrical seizures or worse, a brain tumor or numerous other physiological possibilities is for her to get a ***full workup by a sympathetic neurologist***, including but not limited to an EEG. An MRI is almost certainly indicated as well.

It sounds a lot to me like OP's GP has already dismissed her complaints as psychological, not neurological, and is humoring her to avoid making a referral (here, go bring me a shrubbery, no a herring!). This, alas, happens *especially* often to women patients who have difficult or non-specific complaints about self-reported cognitive states (but it happens to men too, including once to me, and the docs missed an infection that almost killed me).

OP, you either need a new GP who doesn't brush you off, or to make an appointment with a (real) neurologist directly, or to insist your GP refer you no matter whether they believe you. You should also ask them *directly* if they believe something is wrong physically. The signs of a sexist runaround are definitely present here.

If they admit they don't believe you, OP, fire your GP. Something is bothering you, something is wrong and you need non-dismissive help. It is, however, very very unlikely that it is "brain damage," and that neurofeedback clinic had no business telling you anything of the sort. If it's a a transient seizure disorder, there's treatments for many of
the causes and symptoms of that and many more people who work around having it. Mild seizure disorders are very, very common. Neurologists are used to seeing and diagnosing them even when they are elusive and unpredictable. Again, I am not an MD but I've been involved in seeking care for two family members with similar issues.

By the way, the vague symptoms from "cognitive" difficulty that OP describes need not even be directly neurological, and don't necessarily correlate with seizure disorders. (This may be why OP's GP is not taking her seriously, as the most common cause of self-perceived cognitive impairment is surely depression/anxiety or fatigue, not brain damage or a seizure disorder suddenly manifesting in an adult with no prior history of seizures, no brain injury, no substance abuse problems, and -- this is crucial -- no brain tumor.

I would personally ask for a referral to an ENT also, just a tip based on a similar personal experience. You have to rule out structures beyond the brain impinging on the brain as well (sinuses, dental, eyes, ears). And you damn sure have to rule out a brain tumor, which an EEG won't do at all.

Better, more engaged doctors are the answer. Not easy, but more worth OP investing time and money in seeking this than in pursuing a red herring EEG from a quack who, indeed as OP suspects, only wanted to scare her into spending a lot of money on whatever bogus therapy the neurofeedback clinic was selling.
posted by spitbull at 4:49 AM on September 1 [8 favorites]

The TLDR: any doc that tells you that you have "brain damage" before they've done an MRI or other imaging is almost certainly a total quack. And any doc who tells you that you need a quack's testing results before getting a referral to a neurologist is also full of it or pretending to believe you while rolling their eyes dismissively. Bad doctor.

I am hammering this because of a similar personal experience. Several serious docs told me it was all in my head. Yeah it was. A serious infection they all missed.
posted by spitbull at 5:06 AM on September 1 [10 favorites]

It sounds a lot to me like OP's GP has already dismissed her complaints as psychological, not neurological, and is humoring her to avoid making a referral

no, they said:

"I have been sitting on my neurologist referral worried that something bad is going to happen to me."

But yes, OP, go to the neurologist as soon as you can with or without this paperwork. The absolute most important thing to say and stress is that your cognitive difficulties/potential seizures started this past year and were not present at the time of your previous appointment. If they don't take you seriously or insurance forbids you from seeking second opinions, try a psychiatrist who is also board-certified in neurology. It is unfortunate that you will probably have a much easier time getting a psych referral than a new neurologist referral; however, if they suspect something specific from your symptom description, they may be able to talk to your neurologist in a way that will carry more weight than messages from a GP would. especially if your GP isn't even trying to advocate for you or, alternately, say what they really think.

I do not believe a bad neurologist will take it well if you explain that you went to some third party office for non-medical testing because you didn't trust her to listen to you. She should, but she won't. So I am worried that it will not help you even if you do get hold of this paperwork.
posted by queenofbithynia at 7:20 AM on September 1 [1 favorite]

Sorry I missed it that OP has a referral already. In that case, yes, just go. Since insurance didn't cover the prior EEG anyway, just don't even mention it. Describe your symptoms, explain they are recently emergent, and let the neurologist do the diagnosis.

Being calm, persistent, and focusing on reporting accurately what you are experiencing is key. Best of luck to you, OP.

I still find it odd that the GP would support the need for OP to obtain the first EEG before seeing the neurologist. It suggests the GP thinks OP will be read as making things up or experiencing a conversion disorder without it. Of course we don't have all the facts here though.
posted by spitbull at 8:49 AM on September 1 [4 favorites]

I have been sitting on my neurologist referral worried that something bad is going to happen to me.

I also know my neurologist's personality and knew she would just tell me my MRI was already shown to be clear if I went to her again.

You have a referral to a neurologist, which is what you need. You are putting off going to that neurologist based on a lot of assumptions about what you think you know about her personality and on what she said two years ago, based on testing that was done at that time, which is your current obstacle here. The quack pseudo-EEG thing is not relevant.

You are having new symptoms, since your last MRI, that are causing you concern. They may or may not be any of the things you're worried about; they may not even be neurological. But the best person to determine that is a neurologist. Any neurologist (any doctor!) who says, "You were fine two years ago, so I'm not going to pursue any workups" is a bad doctor, but you have not even given your neurologist the chance to disappoint you in that way. You are making assumptions about what she would do -- and you are making assumptions that she is an unethical incompetent clinician -- based on interactions from two years ago and from your interpretation of what your GP said. (And what your GP said may likely have been based on how you presented this information. A patient saying "I had EEGs done that indicated seizures and brain damage" is way different from a patient saying, "I went to an unlicensed non-MD for neurofeedback and they said I should give them a lot of money for treating the brain damage they diagnosed." Most doctors are going to take the former seriously but probably write off the latter.)

Stop working on assumptions and old information. Go to the neurologist. If she blows you off, then you can tackle that as a separate problem based on what actually happened. But you're likely to get in to the neurologist sooner than you're going to get useful records from this neurofeedback guy, so you might as well start with the neurologist anyway.

Please. Go to the neurologist.
posted by lazuli at 7:31 AM on September 2 [3 favorites]

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