Questions About Diagnosing

Hello all! I just have a few questions.

I saw my psychiatric nurse yesterday, and told her that I believe I struggle with c-ptsd. I told her that I believe I've been misdiagnosed. She said c-ptsd will most likely just be added on to my current diagnosis (Schizoaffective Disorder Depressive Type and GAD).

I was just wondering if I don't feel like Schizoaffective and GAD fits can I request to have it removed from my diagnosis? Would it be an issue to leave Schizoaffective/GAD and just add c-ptsd? I want to make sure I'm treating the correct issue.

Thanks all!

Hi cptsdwhoa,

At this time C-PTSD is not part of the DSM even though it should be because it is a "thing", a much more of a "thing" than 90% of what's in DSM. So, since it's not included in the DSM, I don't know how your psychiatrist can add it to your official dx. She might believe in it though, but she has to know that, at this time, it's not officially recognized.

If you don't feel that the dx label that is given to you fits you, you certainly should bring it up and discuss it with her. But she has the right to refuse to remove it from your records because she, as a medical professional, has the authority to determine what your dx is, whether you like it or not.

I'd like to add that I don't agree with the way the system works. I generally don't consider DSM labels valid medical dxs, though I can see how they sometimes be useful. Regardless of what I agree with, the system works the way it works. So, again, yes, you have the right to discuss what kind of a label fits you better, but you don't have the right to insist that the current label be removed. It's just the way it is.

I think that psychiatrists, and for that matter therapists, really treat symptoms, not disorders. So if you are experiencing depression the psychiatrist might prescribe the same antidepressant, regardless if she thinks that depression is part of C-PTSD, schizoaffective disorder, major depressive disorder, dysthymia, bipolar disorder, or whatever other disorders have depressed mood as a criteria. And a therapist might work on self-esteem or increasing activity or challenging thoughts if depression is the primary symptom right now. The treatment might be different if anxiety seemed more prevalent.

That said, words and labels matter to most people. I've seen many therapists and I always ask what they have diagnosed me with. Most of the time I have been ok with it if they label me with something close to what I think I have: major depressive disorder vs. dysthymia for example. I'll own that. But I threw a five alarm fit once when a therapist diagnosed me with personality disorder, NOS. That seemed like a lazy catch all diagnosis. Pretty sure I changed therapists soon after that.

To my previous post I'd like to add that if you don't agree with the dx she gave you, you have the right to seek a second opinion. That's always an option.

Ah, that makes sense Ididitmyway. I guess that's why she didn't get into changing it, but she brought up my previous symptoms (in relation to telling her about my desire to move out of my current place). She mentioned how I used to hear voices telling me to move. I told her I haven't heard voices in a long time, but I understand what you're saying. I doubt that that diagnosis would be changed.

Thank you for the advice! I will ask them to at least add ptsd and try to work with a therapist that understands c-ptsd.

I agree with you. I've been in and out of treatment since I was about 9. So that's about 20 years now. Not one of them ever mentioned ptsd (though I've had multiple diagnoses). I finally heard it last year, and my therapist was an intern! That's one of the reasons I was so outraged. How dare she?! She barely has the experience! Haha that's what I thought anyway. She was right it turns out.

Ah, I get you. I can own my my diagnoses. I do believe I've had issues with it before. It's calmed down so much that I figured it wasn't true. Mental health truly is a journey! At least I know I can change my doctors and therapists!

Adding on to what Ididitmyway said. The other thing with the diagnoses--are you using insurance at all to pay for your treatment? If so, they require a diagnostic code, and if C-PTSD isn't in the DSM-V, then I imagine there's not a code for it. My T just uses major depressive disorder as the code for me, even though he's acknowledged that I also have OCD and generalized anxiety disorder (and they're really probably my bigger issues and what we spend more time discussing).

Ah, okay I see. Yes I am on disability and use Medicare. That makes a lot of sense. I see that ptsd can be added but c-ptsd can't. Thank you for the information! Yeah, I was thinking that I do meet the criteria for ptsd, and I will try working with a therapist who has knowledge of it (and c-ptsd). Honestly, we spent more time focusing on my depressive symptoms and anxiety. I imagine that will continue as well as addressing the ptsd symptoms.

——of course therapists work more w the symptoms. I think it’s more important for pdocs to get all parts of the diagnoses right within reason, because of course they prescribe the meds. With the 15 minute sessions I don’t see how they do anything right. I have diagnosed myself all my life until I finally realized I was bp2 mixed. Pdocs don’t like to put labels on you sometimes, because we are so suggestible. Me, I’d rather know, but after they told my girlfriend she was borderline she kept getting hospitalized w suicidal thoughts.
The thing I’m really getting irritated about is that I am having to get ideas about meds changes myself w pdoc only there as a safety net w knowledge of titration up and down, interactions, etc. The 15 minute med check is ridiculous unless your life is smooth sailing. I am reminding myself to ask for a longer session if I think something should be changed. Hugs!

Hugs! thanks so much!

Indeed luvyrself! It's sad that they kind of shuffle you in and out in fifteen minutes. Like you mentioned they prescribe the meds so they might want to get it right! Sadly, my Schizoaffective diagnosis was while I was on the ward. The doctors stop in for a hot second and then you're diagnosed for life. They really don't have the time to thoroughly talk to each patient in those circumstances.

For instance, my psychiatric nurse just lowered my Latuda to 40 mg. In the hospital they started me on 160mg. I vomited in the hospital and told the nurses. I guess they didn't connect the dots. My old psychiatrist had to lower that to 80 mg because of the side effects.

The side effects got so bad that I mistakenly quit "cold turkey." Thankfully that's when she lowered it to 40 mg. She didn't understand why they started me so high in the first place! Yeah, it can be difficult when you get that label. I've fluctuated. Learning about ptsd has been so liberating. But previous diagnoses just left me depressed.

I couldn't agree more about the meds! I do the same with the pdoc. Like, I never knew I could withdraw from psych meds (I learned the hard way)! I've been on and off of them since I was fifteen, but I only heard about relapse. So, I'm learning to be WAY more involved in my treatment (seems like patients have to put in the leg work). I'm going to try medication management therapy with my pharmacist.

Don't mean to hijack this thread, but I was thinking this:

Diagnoses and billing and coding are very complicated using the DSM-5, ICD-10, and CPT codes for behavioral health services. I think there's a CPT code for just medication management, but if the appointment morphs into "counseling," even unintentionally, the pdoc can tack on an additional charge for reimbursement. Knowing this makes me want to take a stopwatch into an appointment and hit the door at 14-1/2 minutes and then check his billing to see what was submitted to insurance. My pdoc enters notes on his PC during the appointment, so he prints out and hands me a med sheet and closes the file as he accompanies me to the appointment desk. This means he can immediately bring in another patient. "Next!" Pretty efficient.

I don't distrust my pdoc, but I've seen more than once that a couple of codes (or even three) were billed when the appointment seemed almost mechanically brief. "How're you doing?" "Okay." "So we don't need to tweak meds, then." "Nah. Don't think so." I should just walk out then. But instead, he asks, "How is work going?" "Pretty stressful." "Well, I recommended that you not work, remember?" Then the total visit goes, say, 18 minutes. I like him a lot, and I think he enjoys my visits (or acts like it, anyway), so talking over the 15-minute allotted time is not unusual.

I think med management visits are just a bunch of **** really. Patients, I think, feel short-changed, but doctors do, too. They usually don't want to function as pill pushers, and they mostly go into psychiatry because they want to help PEOPLE (and they can have good work/life balance in this field). Having an alliance with a patient doesn't occur in four 15-minute appointment throughout the year.

Hmm...I never thought about that before SparkySmart. This makes me think of the grace period when I see my pdoc. The last time I was late I was told it's five minutes. FIVE minutes lol! They must have adjusted this because it's ten minutes now. They get you in and get you out. No room for being late.

I'm not sure how my sessions with her are being billed, but I really appreciate my current pdoc (well the psychiatric nurse anyway-haven't seen the pdoc in over a year now). I can tell she wants to help people and she's concerned about me. She really meets me on my level without catering to my feelings of despair and worthlessness. But it's true it's still in and out and on to the next.

I really have time to dig deeper with the therapist only.

This is why I like going to p-docs who do 25-minute med checks instead of 15. My current one and most recent past one do this, and it gives time for them to actually assess how you're doing and, if needed, discuss a med adjustment (which is what happened today). The one I saw before these two did 15-minute appointments, and it often felt very much like what Sparky described.

Yeah, I often find that I have to write down what I want to get to so I don't forget. That way we say hello and I can get right down to business. That helps me. Now, if I could just remember to actually look at what I wrote down and use it during the session

—-my pharmacist caught it when I should be on tegretol time release. What’s mmt? On latuda I was afraid of flute music on pbs. My practitioner and husband said stay on it. Lol lol lol. You’re both fired. More lol! Nice talking to you!

So true!

I'm lucky to have a pdoc who sees me for half an hour at a time. We do meds but she also checks in on how I'm doing, particularly my social life.

Yeah, I really appreciate my psychiatric nurse. We see each other for a short time, but she does really encourage me to not see my diagnoses as death sentences.

Okay, I did see my new therapist a few days ago. I was still in the system at my agency as Schizoaffective Bipolar type (although they changed it in the hospital to Depressive type in 2015). She explained that if you've ever had a manic episode your type is bipolar.

That makes sense. I accept that (today anyway lol). I agree that I've had at least one manic episode, but I tend to stay on the depressed end. I also agree with the Schizo aspect. I did hear a voice again about two months back. I'm viewing this in the light of I'm so much better and that's why I've had so few symptoms. She removed GAD and replaced that with PTSD. I'm SO relieved.

We both agree that the GAD was just an expression of the underlying PTSD. I'm not struggling with GAD right now, but the anxiety I experience with C-PTSD is still there. Schizoaffective Bipolar type and PTSD (C-PTSD honestly, if it were included in the DSM) are my current diagnoses and I agree with that.

your providers are unlikely to care what you think in terms of diagnosing, and will continue to write a diagnosis that they can get insurance to pay for. sorry.

Hmm, thanks for your reply. Yeah, I can't forget about the fact that they have to get paid somehow. I wouldn't surprised if that's the case.

I’m glad you have a competent psych nurse.

I completely agree with the person who said that having an alliance with a patient doesn’t occur in four 15 minute appointments throughout the year

In my opinion it would be next to impossible to diagnose correctly in this time, and certainly they wouldn’t be likely to be of much help (aside from “medication management” )