Bad start to neuropsychological testing, how to proceed?
April 17, 2019 3:38 PM   Subscribe

My partner has struggled with attention, memory, and executive functioning issues her whole life. She was diagnosed with depression and anxiety in her teens, and her doctors have always told her that her attention issues are because of her MDD/GAD and that it would get better as her mental health improved. 8 years later her mental health has improved significantly, but the attention and memory issues have not changed. She went to get evaluated for ADHD and had the intake interview last week and did not feel good about how it went.

Due to her medical records, the doctor knew about her GAD/MDD going into the interview. The doctor focused very strongly on questioning her about her depression/anxiety, and talked over her a lot. She felt like she had very little opportunity to talk about her attention and memory issues. After about half an hour of questioning, it seemed clear that the doctor had decided my partner's problem was depression/anxiety and low self-esteem , and spent the rest of the time trying to convince her of that and insisting that CBT would "fix" her (exact word used multiple times). The doctor said repeatedly that my partner has no problem doing xyz, she is just "choosing not to" (this was repeated 5-6 times).

My partner knows inattention is a symptom of depression and anxiety and was open to that possibility, but she is seeking the evaluation because she feels like she's actually in a pretty good place right now and yet her attention symptoms haven't improved. She feels pretty good about herself as a person and rarely has anxious thoughts or low moods anymore, and is doing a lot of things she couldn't do when she was depressed (exercise, hanging out with friends and family, volunteering), she just still has trouble with things that require mental focus (filling out job applications, planning meals, handling budgets, etc.). Yet the doctor kept telling her she has terrible self esteem and impostor syndrome and that's the cause of all of her problems. The doctor also told her that she's just "avoiding life except for the fun parts" because she spends a lot of time playing video games and has trouble doing chores and getting food for herself.

My partner came away from the interview feeling basically steamrolled and like the doctor did not get an accurate picture of her at all. The doctor did agree to still conduct testing, though she implied this was to show her nothing's wrong with her. The testing session is coming up, but we're a little worried. We're afraid that even if testing shows attention/memory/executive functioning/whatever issues, the doctor will just chalk it up to anxiety because those all can be symptoms of anxiety. Again, my partner is open to this possibility, but was hoping the doctor would help her parse that out by comparing when and how she experiences these symptoms. At this point, though, the doctor seems convinced it could only be anxiety and low self-esteem, and she said very bluntly, "Your problem is not ADHD."

She is on the hospital's financial aid program and will not be paying for the assessment, so she's planning on still going through with testing. There was a six month wait to get this assessment so she really doesn't want to cancel and schedule with another doctor. She's going to try and talk to the doctor again during testing, but 1) the doctor may just talk over her more, and 2) given the size of the hospital the testing may be administered by a tech instead of the actual doctor. Is there anything she can do to make sure she gets an accurate and unbiased assessment?

Also, I am sure many people will suggest getting a second opinion afterward, but practically, how would she do that? I know you can't re-take most psychological tests within a certain time frame. But if she takes these test results to a different doctor and says "I think this doctor diagnosed me wrong," is that going to be received well?
posted by undisclosed to Health & Fitness (15 answers total) 1 user marked this as a favorite
I'd be worried about being evaluated by a biased assessor, because there is a qualitative conponent even to those assessments based on psychometric testing (as opposed to the quick history of symptoms/checklist assessment many psychs use) from what I recall.

It sounds like the doctor here has already made up her mind -- is there no way of appealing to the hospital for the tests to be conducted another provider? How can she be so adamant about your partner's diagnosis before actually doing the testing?
posted by shaademaan at 3:49 PM on April 17, 2019 [4 favorites]

Would it not make more sense to seek a doctor she trusts to start the whole examination from scratch, right now? If she is not confident in this doctor's skills and understanding, she has a right to discontinue use of their services. If she had a lawyer who didn't listen to her problem, and just told her what it should be, would she continue to retain their counsel? Maybe. Should she? Shit no.

Sack the quack.
posted by howfar at 3:50 PM on April 17, 2019 [14 favorites]

In this case, I think that no assessment at all would be no worse than one performed by this doctor, who has already determined the outcome before performing the exam, as this doctor's assessment may dog her steps as she seeks further treatment. I think she should try to find another doctor, even with the delay.

What a terrible doctor. Criminy.

P.S. What a terrible doctor, but

she is seeking the evaluation because she feels like she's actually in a pretty good place right now and she spends a lot of time playing video games and has trouble doing chores and getting food for herself seem to be in considerable tension. She may be in a better, even a lot better, place than she was, but struggling to perform basic life functions like these doesn't sound like someone who actually does have their depression/anxiety well-controlled. That doesn't mean she can't have ADHD! I am in no way validating that doctor! But it does mean she might benefit from discussing more or different treatment with her regular mental health care provider.
posted by praemunire at 4:02 PM on April 17, 2019 [5 favorites]

That's awful. I'm sorry that happened.

Was this a psychiatrist (MD/DO) or a neuropsychologist (PhD/PsyD)? The way it usually works is that a psychiatrist will order the testing, a neuropsychologist will meet briefly with the patient, and a tech will administer the actual tests within the parameters set by the neuropsychologist. Then the neuropsychologist does the interpretation and writes up a report and sends it back to the physician, who formally makes the diagnosis.

If your partner is unhappy with the physician's assessment after the testing, she might be able to get a second opinion from someone else (if finances allow) and bring them the neuropsychologist's report, the same way they'd bring along an MRI or something. If it's the neuropsychologist they met with, though, it might be trickier since neuropsych decides which tests and metrics to use, and interprets the results. Regardless, they probably won't be interacting with this person much on testing day, if that's any consolation.
posted by basalganglia at 4:40 PM on April 17, 2019 [2 favorites]

I would skip this assessment for reasons stated. Even though this one is free. The wrong diagnosis off the bat *is* worse than none, because doctors mostly trust each other, so the label will likely stick. This times ten when it’s a psychiatric diagnosis.

Yes, ADHD and anxiety can look very similar. That’s why they’re supposed to do the careful assessments... I came down the line and the psychiatrist I saw said we could try an empiric approach (ie try drugs and see if they help, which was cheaper) or he would refer me to a neuropsychologist for testing ($). Either way he wasn’t going to jump the gun on a label. I think because he knows they stick, and es cautious. I think, wait until you find a provider with that kind of caution. Because it’s not just the tests, ultimately it’s down to the clinical impression, and the impression this person has of your partner is, well what you’ve told us.

So I’d wait.

Meanwhile, people who can’t take ADHD meds because of cardiac symptoms sometimes make do with coffee (as a potential way of managing things for now). Plus various coping techniques of course, many are described online.

I would also ask, has a full medical screen excluded other explanations (like sleep apnea or sleep deprivation, nutritional deficiencies and/or digestive problems that cause nutritional deficiencies, etc)? Low iron, vit D, and other things that cause fatigue can absolutely affect attention.
posted by cotton dress sock at 4:42 PM on April 17, 2019 [3 favorites]

Response by poster: It was a neuropsychologist, and she was referred by her GP (who has checked for a bunch of other things already). I know a student who works in this clinic, and from what's she said (talking about getting to sit in on feedback sessions) I think the neuropsych will be the one making the diagnosis. That said, she already has a diagnosis of MDD and GAD. The worst the neuropsych can do is re-diagnose her with anxiety and depression, right? Will that ultimately be harmful? It's my impression that she does not have to share this diagnosis or report with anyone outside this hospital system, which already has depression/anxiety in her records, and which is already being used against her in this hospital anyway.
posted by undisclosed at 4:51 PM on April 17, 2019

I suppose one possibility might be that this hospital will have a neuropsychological assessment *excluding* ADHD on record. So that, if she gets diagnosed with ADHD in future and has to go back to this hospital, the drugs might raise some flags? (Eg if she needs an emergency refill or is there for some other reason and drugs she’s taking are queried? But this would depend on medical staff reading that far back in her chart, which, lol. Might not come up at all. But people do sometimes have issues re the drugs across providers. For example they may be denied and called drug-seekers.)
posted by cotton dress sock at 4:59 PM on April 17, 2019 [1 favorite]

Best answer: stimulants -- and I am only talking about them because even though they are not the only potential treatment, they are the big reason doctors and especially mid-level practitioners are such intransigent dicks about ADHD -- are sometimes prescribed off-label for depression, lethargy and sleep troubles too. so it is perfectly possible that ADHD treatments might help with her current issues with functioning even if she is "really" just depressed. this just is one indication that the gatekeeping test rigamarole is more for the practitioners' peace of mind than for the test-taker's benefit. it will not have escaped your and her notice that nobody makes you do a three-hour battery of tests to prove you're legitimately for-real depressed, even though antidepressant medication can be a nightmare to discontinue in ways that most ADHD medications are not. it's not about patient safety.

so, while it is nice to discover a hidden truth about yourself, I suggest that she not get hung up on the testing. if she has to do it to be taken seriously, she should do it. but that's all. the testing is not the point. treating her symptoms is the point.

Also, I am sure many people will suggest getting a second opinion afterward, but practically, how would she do that?

look up a list of local psychiatrists and start making appointments.

I know you can't re-take most psychological tests within a certain time frame. But if she takes these test results to a different doctor and says "I think this doctor diagnosed me wrong," is that going to be received well?

maybe not, so...don't take the test results around. why borrow trouble? why consider repeating the experience? she has specific symptoms; good treatment for depression has not resolved them. that is the relevant information that new doctors will need to know.

but also, the test results will have actual data in them, which may be (should be) separable from the interpretation of them. throw away the write-up if she doesn't like it; get hold of and keep the raw results. I have never taken tests like this, but I do know that doctors love to discard other doctors' interpretations and make up their own, given half a chance.

if she is not interested in drugs, read "therapist" for "psychiatrist" above. same deal. all she needs is to find one who takes her self-reported symptoms seriously, has experience with them, and is willing to prioritize them in her treatment plan.
posted by queenofbithynia at 5:06 PM on April 17, 2019 [3 favorites]

After about half an hour of questioning, it seemed clear that the doctor had decided my partner's problem was depression/anxiety and low self-esteem , and spent the rest of the time trying to convince her of that and insisting that CBT would "fix" her (exact word used multiple times).

I think this is so wrong as to be practically ridiculous, but on the other hand, refusing therapy and looking for medication only is a bad look. Beyond just being a bad look, though, you know who a great ally for this would be? A therapist who she's been working with consistently through CBT or another practical emotional skills kind of therapy who can state with certainty that after a certain span of time, it isn't helping for this particular problem. Because of the use of controlled substances, I don't like saying this, but I think playing along tends to be the best course: "Yes, why don't we put off this test and let me spend a few months doing this thing you suggested and seeing how it helps."

CBT is not in any way that kind of miracle, but it or something like it is still an important part of dealing with the set of problems she has. My mental health is not anywhere near the disaster it was as a teenager, but it doesn't just spontaneously go away any more than the ADD does, and most of the available ADD medications have a tendency to make anxiety worse. I have admittedly not had the personal experience of having a diagnosing prescriber explicitly say that I don't have ADD, but my experience working through the system suggests to me that it would be better to have that delay if necessary. I don't think the wrong diagnosis is a permanent, unfixable disaster, but the number of uphill fights in this process is high, and I feel like I've gotten a fair amount of mileage out of showing that I'm not just in this for the Adderall, even though the Adderall is the thing that actually helped. (In my case it was an extended period being nauseous 24/7 trying to make Strattera work, but same problem where I felt that refusing it early on would set off alarm bells.)
posted by Sequence at 5:35 PM on April 17, 2019 [2 favorites]

Response by poster: I should mention my partner readily agreed to try CBT and set up an appointment with the therapist the doctor recommended. She's been in therapy in the past (though not specifically CBT) and it helped her considerably, she just felt like she exhausted the bounds of what therapy could do for her because her primary problems are forgetting things constantly, being extremely easily distracted by interesting things, and having trouble disengaging from tasks she enjoys (these are the main things getting in the way of making food and doing chores). But yes, she's going to try CBT for a while regardless of the test results.
posted by undisclosed at 5:59 PM on April 17, 2019

For me personally, the Adderall helped, but what has helped me even more has been to have a routine and to use organizational tools to help me keep on track. I’ve made a few comments before about how I use a whiteboard and Alexa to good effect. Adderall helped my mind stay focused on one task and then moving to the next one, without all the white noise and mental effort that it usually takes, but it was definitely not good habits in pill form.

If OP’s partner is looking at some delay in finding a doctor that will distinguish between her existing diagnoses and potential new ones, then it might be helpful to at least start on the “routine and organization” portion of dealing with ADHD. Someone above mentioned that caffeine is an effective means of “self-medicating” for ADHD, and that’s certainly something to try that doesn’t require a lot of commitment. If OP’s partner isn’t a coffee or green tea drinker, I’d recommend just buying caffeine pills and taking one about half an hour before she needs to be productive. If it becomes easier to focus, well, then you know you’re on the right track.

The term “CBT” sounds like something the doctor would say to brush off your partner’s concerns, BUT instead of looking at it that way, I would recommend framing it like this. ADHD becomes easier to manage when you’ve got a good routine down, and you have some tools to help move yourself out of “I’m going to play on my iPad for 6 hours instead of doing my laundry” (um, real example from my day today). It’s easily as effective, if not more so, than medication. It’s part of the overall treatment of ADHD. So Partner should not look at it as something the doctor wants her to do instead of getting treatment. I agree that the doctor’s approach and language were crap. But a good ADHD doctor would still include this in a treatment plan.
posted by Autumnheart at 6:13 PM on April 17, 2019 [2 favorites]

It also bears mentioning that tons of people don’t take ADHD medication every day. It’s not like a lot of mood-disorder medications where you must take it daily or you could experience negative side effects. Tons of people only take it during the work week and skip it on weekends, or they take it during the school year and go off for the summer, or generally take breaks from it if they find that they’re building a tolerance. There are also plenty of people for whom medication is contraindicated for whatever reason.

So the CBT portion of the treatment will help build the day-to-day lifestyle that she wants to see herself capable of. If she gets a formal diagnosis and decides to go on medication, that will make it easier to focus mentally. But I think people who suspect they have ADHD get hung up on believing that medication will be a cure, the way antibiotics cures an infection. Like if you take ADHD meds, you’ll get tons of stuff done, always be on time, and never feel the urge to watch movies instead of doing your homework. Yeah, I wish! I’m afraid it is not at all like that. Medication helps you concentrate. That’s it. Everything else about ADHD is learning how to make better use of your time, and the therapist will be a great resource for that.
posted by Autumnheart at 6:41 PM on April 17, 2019 [2 favorites]

It is traditionally hard to get women diagnosed with ADHD because it's so much easier to do anxiety or depression and because coping with it causes anxiety and depression in a horrible chicken and egg situation so they end up very co-morbid. I've given up on getting an ADHD diagnosis for myself because it's too much effort here. It's taken nearly two years to get my daughter a diagnosis and that's only with finally the teachers coming around to support that yes, she isn't daydreaming and rambling on purpose, she is different. Her psychologist is very nice but refused the diagnosis because she has a dyslexia diagnosis and wanted us to wait for that to be "cleared". Wtf.

There's a lot you can do without the meds to treat ADHD and CBT is one tool. I live by lists, checklists, calendar reminders and timers. People go hahaha but you are so messy and I think silently imagine if I didn't have my lists and reminders then, I would be in a cardboard box eating dry cereal.

Financial aid doctors is a hard situation. I dress nicely and write a list of questions down and do my best pleasant patient voice when I'm pissed. It's a power imbalance and you have to negotiate the best you can. Usually the doctor doesn't know your financial status in particular past immediate cues, so you can directly work with them if you have social credit or can bring someone with social credit to trade on. Otherwise I'd talk to a medical social worker or an administrator about changing doctors due to patient professional concerns. You may not be allowed - I wouldn't be in our system, not without losing financial subsidies.

If she knows people locally with ADHD, ask them for recommendations. That's how we found our better private doctors and therapists.
posted by dorothyisunderwood at 8:02 PM on April 17, 2019 [9 favorites]

Best answer: Yeah, this doctor seems awful. It's bad assessment practice to completely ignore what your patient is literally TELLING YOU is the problem in regard to how comorbid disorders affect each other. It's also bad practice to guarantee that any given treatment will work for any given person. I'm so sorry this happened to your partner.

If her therapist is a good one, they will actually listen to her and treat her with CBT designed for ADHD. Not all CBTs are created equal, but there is a specific version for ADHD that works very well, and it would be worth finding a therapist trained in it.
posted by quiet coyote at 8:32 AM on April 18, 2019 [1 favorite]

Best answer: Greetings, OP. If this is in any way useful, please give your partner a hug from me. This sounds like an incredibly frustrating experience. I have found it helpful to approach people, especially people with whom I am frustrated or enraged, with a sense of curiosity and an open mind. To the best of my ability, that is. Framing questions in this manner seems to be less likely to trigger defensiveness on the part of the person I am approaching and sometimes makes it easier for the person to understand my perspective.

If this were me, I would A. Bring along a partner or friend to take notes and to remind me if I forget to raise anything and B. Speak directly to the annoying, bossy, talking-over-me doctor something like this:

I truly appreciate your efforts on my behalf. I would like your help to understand a few things you said during our last meeting.

1. You suggested that my problems were depression and anxiety rather than ADHD. I am not invested in getting a diagnosis of ADHD, I just want help. Still, I am confused because research suggests that it is surprisingly common that women with ADHD also have anxiety and depression. MedicalNewsToday says ADHD is underdiagnosed in women partly because it so often presents with anxiety and/or depression.

It's great if I don't have ADHD, I just want to feel better. Are you at all open to the possibility that I might have ADHD? Why or why not?

2. When we last met you told me several times that I "have no problem doing xyz, I just choose not to." That is not my perception or experience. Can you explain how you came to that conclusion?

3. Thank you for discussing this with me. I know I can't diagnose myself, I am simply trying to get help. The difficulty I have functioning on a day-to-day basis has not disappeared even as my mood has improved. That alarms me. As you know, I will be following your advice about the CBT because I am eager to do whatever it takes to get healthier.

When I read your Q yesterday, I found the description of your partner's experience upsetting. I also found some of the responses upsetting. Your partner has every reason to seek an accurate diagnosis. That is a valid, meaningful goal.

For some of us with ADHD, a late-in-life diagnosis was the only thing that helped our lives improve in a meaningful way in terms of day-to-day functioning. Some 20+ years ago, I was seeing a therapist who specialised in ADHD in children and when I tentatively raised the possibility that I might have it based on my symptoms, she dismissed the idea. Twice. It was only two years later, after I was no longer seeing her, that I found and paid a neuropsychologist who specialised in adult ADHD to do an evaluation. That is how I discovered that I had ADHD. So forgive me for being somewhat enraged on your partner's behalf.

Medication helps you concentrate. That’s it.
For some of us, being able–finally–to concentrate is everything and hardly a quality to be dismissed. No, medication is not a magic wand. As I generally say, for me medication is like a disabled person who needs to use leg braces or crutches. I cannot run with medication, but now I can walk. Without the medication, I can barely do that.

There are a zillion ADHD-related threads on the green, which you and/or your partner can explore. Virtually all of them point out that medication is useful for some and useless for others. Just as medicine is not a universal help, neither is CBT. There is no universal magic widget for any given individual but it seems crazy (IMHO) to avoid getting an accurate diagnosis, if possible, to help treat whatever conditions your partner actually have.

Here is the MedicalNewsToday article. According to Allure, A co-author of a 2016 study on women with ADHD described the prevalence of mental illness among the subjects as “disturbingly high.” The study found that more than a third of women with ADHD also have an anxiety disorder and almost half have seriously considered suicide. It’s not uncommon for women and girls to be diagnosed with ADHD only after seeking treatment for anxiety or depression.

It is also well-known that people with ADHD often have huge problems with executive functioning in a variety of areas that make it really hard to accomplish the things you want to accomplish. That the doctor "kept telling her she has terrible self esteem and impostor syndrome and that's the cause of all of her problems," horrifies me. I don't know what your partner should do but I would save up my money, as I did, for an independent evaluation if this one supposedly shows no evidence of ADHD because this doctor does not sound trustworthy. It has taken your partner 8 years to get to this point; I will tell you that I wish I had gotten my diagnosis much, much earlier. If an independent evaluation shows that she does not have ADHD, that is also important information. Good luck to you both!
posted by Bella Donna at 3:21 AM on April 19, 2019 [5 favorites]

« Older Incentivizing a lease buy out   |   Adventures of Wade and Henry, part one Newer »
This thread is closed to new comments.