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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 17 of 17. This is the beginning of the thread.
Posted by terrics on January 2, 2005, at 10:43:36
I am curious about what you all think about having or not having a dx. Do you think it better to have one? Do you think pdocs should really watch you and change dx if needed? How does it feel when you really KNOW pdoc has hit the right one when she /he explains it to you and you really do not want that dx but you know it is correct. How do you feel when you are sure it is incorrect? If you answer this post please explain. I do have thoughts on this subject. terrics
Posted by mair on January 2, 2005, at 11:21:27
In reply to about having a dx or not, posted by terrics on January 2, 2005, at 10:43:36
This is a double edged sword. I know that some people feel they were never adequately treated until they got the right dx, and thus the right meds, even after decades of others never questionning whether the initial dx was correct. I know that prescribing meds is sometimes more art than science, but there's no doubt that there are huge differences in how you treat some dxs as opposed to others.
On the other hand, on the occasions where I've had a pdoc or therapist talk about me in a particularly clinical way, using clinical language, I've hated it. It's almost as if I've been stripped of some measure of my personhood. Given this, I think I'd hate to actually read anyone's notes about me.
And there are some dxs I wouldn't want to get, although I think my feelings about this would depend on whether I was told, at the same time, that this dx could be successfully treated. I don't want to be reduced to a label, and sometimes I think we have trouble getting beyond the labels someone else has given us.
I hope this helps.
mair
Posted by B2Chica on January 2, 2005, at 16:22:37
In reply to about having a dx or not, posted by terrics on January 2, 2005, at 10:43:36
i agree with mair that this is a double edged sword.
at first i wanted more than ANYTHING a definitive dx. i got it and from several docs.
getting that did not make me better. but it gave me something to grasp onto. i'm a quantitative person and the not knowing was terrible, once i had a "label" i did TONS of research, reading, books, websites...you name it.
I think i needed that in the beginning. it's like it gave me something tangible to do about it...the reading, being my own advocate on medications, etc.Now i have a new pdoc cuz the meds i was on before were NOT working and pdoc wasn't listening, i got some assistance, got referral for new pdoc. This one questioned my dx. of BP cuz i don't display typical or extreme manic episodes and he to this day has never said "YOu have X,X and X." instead he treats my symptoms.
At first i Really wanted those words, but, as time went on and the more i've read about Axis 1 and II disorders the more i realize how much the psych community doesn't really know about it (quantitatively), AND that there is just many different views, AND It's such a blurred area everything seems to cross over. so i now understand and respect EVEN more my pdoc for not rushing into labels.I recently found a new T (start thurs.) he did some testing on me and dx was Bp2, ED, Dysthymic disorder, and bpd(depressive type) in that order. i showed pdoc and he commented that that is exact with his thoughts.
So in the end, i do have labels (tack on ptsd, anxiety also).Even if you were to put 100 people with the exact same SINGLE dx in a room all of them will respond differently to medication, all of them have different current living environments, and all of them have different life/growing experiences.
So...in review. i think some people may need something tangible so they can get through the acceptance process (others may not).
i think if you have a good pdoc or T, those labels give them a place to 'start'. If you have bad ones, they follow textbook "cures" and that helps noone.(sorry, there was my little soapbox)
down now.
IMHO
B2c.
Posted by cubic_me on January 2, 2005, at 16:39:24
In reply to Re: about having a dx or not » terrics, posted by B2Chica on January 2, 2005, at 16:22:37
I'm a bit too tired now to write anything too coherent, but I think that some of us (especially the more complex) do not fit entirely into one diagnostic catagory or another (eg dual diagnosis, or between two diagnoses), and pdocs find that hard to grasp and treat. Maybe I'd find it easier if I was given a difinitive diagnosis, maybe not, but I can kinda see where I am on the scale of things and that's good enough for me, for now.
Posted by Dinah on January 2, 2005, at 19:55:34
In reply to about having a dx or not, posted by terrics on January 2, 2005, at 10:43:36
I think it depends. Clearcut diagnoses with clearcut treatments are probably useful to diagnose. It helped a lot to know I had OCD. My case is a pretty classic one, and the treatments are straightforward and proven.
I'm not bipolar II even, but I am on the bipolar spectrum somewhere. My pdoc puts it down as cyclothymia, but I think that may be technically incorrect, since I've had a few episodes of major depression. But the important thing is that my prior pdoc didn't put me on the bipolar spectrum at all, and nearly killed me with AD's without a mood stabilizer. So while I wish they had a bipolar III or IV that fit me better, I'm awfully glad that I've been properly treated with a mood stabilizer.
I've probably got some sort of personality disorder, but there are none that are an absolutely good fit. And I hate the idea of the whole Axis II anyway. I think it should be disposed of, and the underlying biological predispositions properly categorized. Possibly they could add an Axis for "typical coping strategies" which seems so much less stigmatizing than a "personality disorder".
I absolutely do not want to be diagnosed with a dissociative disorder. First, none really fit me exactly. Second, there is too much ignorance in and out of the psychiatric community. And third, the believers in dissociative disorders scare me as much as the naysayers. I prefer that my therapist downplay that aspect, although I'm glad he knows about it and accepts it. I don't mention it at all to my pdoc. I figure it isn't in his area of practice.
So even within this one person, I'm undecided. :)
Posted by Fallen4MyT on January 2, 2005, at 20:02:38
In reply to about having a dx or not, posted by terrics on January 2, 2005, at 10:43:36
Hey Terrics I have my dx which is PTSD and SAD and they fit....my dx was changed once when he thought I had depression severe or something but just like a GP once they delve deeper they often get new information and that tells them maybe they were not right and it gets changed. I am cool with mine it is dead on and very text book case if ya ask me. If I didn't like my DX I think I would have a lot of anxiety about it.
> I am curious about what you all think about having or not having a dx. Do you think it better to have one? Do you think pdocs should really watch you and change dx if needed? How does it feel when you really KNOW pdoc has hit the right one when she /he explains it to you and you really do not want that dx but you know it is correct. How do you feel when you are sure it is incorrect? If you answer this post please explain. I do have thoughts on this subject. terrics
Posted by thinkfast on January 3, 2005, at 11:49:40
In reply to Re: about having a dx or not » terrics, posted by Fallen4MyT on January 2, 2005, at 20:02:38
So what do they call people that have multiple symptoms from many dx's? Like u guys said, some people seem to be easy to label with one particular dx. I have only bits and pieces of certain ones. They all seem to overlap and there are too many similarities. My dx's are around 10 different ones. Some I can see, and others are only from time to time. Like panic disorder...I have a few panic attacks, so now I have panic disorder? It was an isolated incident of sorts cuz of circumstances. Is that one gone now in thier eyes, or do I still have it? Blah! Lately I've been having anger problems, mood swings, and hyperactivity...etc etc.. Why not throw in BP too? I'd like to try some lithium anyway ;-)
Posted by Camille Dumont on January 5, 2005, at 10:40:57
In reply to about having a dx or not, posted by terrics on January 2, 2005, at 10:43:36
As others have stated, its a double-edged sword.
For me it was very liberating but also a rather arduous journey. After some freak out side effects from meds I've always insisted on seeing the psychiatrists reports so I did see all the labels that were slapped on me. In order or appearance it was
1. Adjustment disorder with depressive features
2. Major depressive disorder
3. Major depressive disorder with psychotic features
4. Chronic depression with psychotic features
5. Schizoid personality disorder & Major depressionNow for the bad part, I kept seeing the diagnosis getting "heavier" and more scary which was not the most uplifting thing in the world. It also meant that they kept trying stronger meds including antipsychotics and frankly I kept feeling more depressed and more suicidal and even started to self-injure. It felt hopeless ... especially when my doctor stated that I should take the ADs for the rest of my life.
But then came the last diagnosis and I read what it is, I saw the symptoms, the defense mechanisms used, the habits, etc and I couldn't helpt but think : OMG THATS ME! THAT IS HOW I THINK! I ACT EXACTLY LIKE THAT FOR THOSE PRECISE REASONS!
This is going to sound strange but finally realising what was "wrong" with me was very liberating in that I understood why I was depressed, why I had what people called psychotic symptoms, why I felt so socially ackward, why I loved solitude and had trouble relating to people, etc.
Now it didn't "cure" me and in fact its a bit unnerving to think that you have "something" that basically will never go away but at the same time it gave me an understanding of how I function mentally and it helped me understand my feelings, my urges, my quirks. I would say that it has also helped me accept myself more, just the way I am ... with my "eccentric personality" and in a way it has helped me stop fighting it. Now that I understand, its not that I've given up but rather I've ceased to try to fix "me" to fit a life that others deem "normal" and now I fix my life so that it fits "me" with my SPD.
But again, a dx also carries a stigma. I think SPD is very badly named in that people automatically equate it with schizophrenia and of course full blown psychotic episodes which really has nothing to do with SPD so I only mention it to people very very close to me whom I know will understand.
For me it was positive but again, the stigma and the fact that its hard to get rid of a given label might make it a negative experience for others.
Posted by judy1 on January 5, 2005, at 12:51:54
In reply to about having a dx or not, posted by terrics on January 2, 2005, at 10:43:36
This is a real hot button for me. Since the DSM is written by big pharma and is used as a tool to promote their psychotropic meds I have a real problem with 'labels'. If it's just a way for your pdoc/therp to get reimbursed by your insurance co. because they have to put a code in the box, then it's just a way to get paid. But if it's used as a way to define yourself, i.e. I am bipolar, etc. then I see that as a problem- especially because these labels were created for one thing- financial gain and not with your best interest at heart. My last shrink felt the same way as I do on this subject, and I suspect a lot more shrinks out there concur. Sorry if I came out too strongly on this, obviously labels have harmed me on several occasions.
take care, judy
Posted by terrics on January 5, 2005, at 17:38:58
In reply to Re: about having a dx or not, posted by Camille Dumont on January 5, 2005, at 10:40:57
Hi.
It is nice to here that someone had a very similar experience. I had many DXs...all axis 1 originally until some really crazy therapist told me I was borderline. I knew a little about it so I cried for 2 hrs, in my car.. She was afraid of me, I think.
I did alot of reading and knew it was me. I found a new pdoc and therapist(dbt). She is a pain, but I learn alot from her. I am changing some of my self defeating ways..Good luck. It must feel great to accept yourself. When you have time and if you want to perhaps you can explain how one learns self-acceptance. terrics
Posted by Camille Dumont on January 5, 2005, at 22:39:55
In reply to Re: about having a dx or not » Camille Dumont, posted by terrics on January 5, 2005, at 17:38:58
> Hi.
> It is nice to here that someone had a very similar experience. I had many DXs...all axis 1 originally until some really crazy therapist told me I was borderline. I knew a little about it so I cried for 2 hrs, in my car.. She was afraid of me, I think.
> I did alot of reading and knew it was me. I found a new pdoc and therapist(dbt). She is a pain, but I learn alot from her. I am changing some of my self defeating ways..Good luck. It must feel great to accept yourself. When you have time and if you want to perhaps you can explain how one learns self-acceptance. terricsThere is no magic receipe really. In a way for me it felt better to know what was wrong than to just know that something was wrong.
I remember reading something about life being somewhat like being neck deep in a river ... if you just try to stand still and face the current's full force and to resist, you are doomed to fail. On the other hand, if you accept that the current will sweep you away, you can swim and eventually end up where you want to go. Basically, work on what you can change and stop obsessing about what you cannot change.
In a way I see it as if, for example, I had been born without a leg or had lost one in some accident. Now there are prosthesis that will somewhat emulate a leg but no matter how many pills you take, how sorry for yourself you become, you're just never going to grow a leg. Its the thing that you can't change ... its the river that you're in.
Similarly, I have SPD, the fact that some see it as "pathological" has little relevance to me. I'm wired in a certain way which makes me rather asocial and independent. I'm just never going to grow that part of the brain that makes people like being with other people ... I'm just missing that part and well, there isn't much I can do about it. Its never going to go away, no matter how many antipsychotics and antidepressant I take and no matter how many thousands of dollars I blow in theraphy. What I can do is arrange my life so as not to be overwhelmed by others and maintain a job which guarantees me my sacrosaint independence.
In a way perhaps acceptance is to stop seeing your dx as a disease but rather something that you have to live with, like your height, the color of your skin, etc. There is no "normal" mental state ... there are only different ones. For me SPD is not a flaw, not a "problem" or something to be ashamed with ... it is an uncomon type of personality.
Maybe it means I'm not really jovial and maybe it means I come of as rude or even mean but it is who I am. Those who cannot live with that can simply remove themselves from my presence or tell me to go away. I no longer pretend to be someone that I am not because that was what was hurting me ... and made me want to die ... not the SPD.
Posted by thinkfast on January 14, 2005, at 10:17:16
In reply to Re: about having a dx or not, posted by cubic_me on January 2, 2005, at 16:39:24
does anyone feel like a hypochondriac because of their research? There's a bunch of Dx's I can relate too, and not at all to others. There is never any certainty to wether I'm making the symptoms out to be more than they are, or if I really have the dx i'm reading about. Been told I have OCD so I have to doubt myself, right? hehe
Posted by thinkfast on January 14, 2005, at 10:23:12
In reply to about having a dx or not, posted by terrics on January 2, 2005, at 10:43:36
i'd also be interested to hear what your pdocs or T's think of someone that fits into many of the dx's --------"the more complex" of us
and, how r u supposed to find the right med if you fit into a bunch of the dx's?
I've never really brought this up to either of my doc's...I've got a new pdoc...maybe this is the time? He was going to let me try Ritalin and I don't have an ADD dx?
My T is an idiot, so I won't even bother there..lol
Posted by littleone on January 16, 2005, at 16:23:52
In reply to about having a dx or not, posted by terrics on January 2, 2005, at 10:43:36
After I witnessed the accident, I was given a diagnosis of depression of the melonchonic variety (think I spelled that badly) and PTSD. But it felt like I practically had to lead my ex-T around to those DX's by the hand.
I also believe that I have AvPD with some traits from other PD's along with some OCD tendencies (but not OCD itself), but my current T won't diagnose me. I've tried to get it out of him a few times, but he always jumps over my questions. He refuses to diagnose, but at the same time, he's pretty willing to admit that I'm really messed up.
I can understand why he won't. Often it is easy to live up to your diagnosis or to use it as an excuse not to improve or to blame it for all your problems. Use it to dodge the responsibility of improving. It helps to maintain a victem mentality.
But by the same token, I feel like I need the validation. When I told my ex-T that I thought I had AvPD, he kind of treated me like "I'm the doctor, just leave the diagnosing up to me little girl". My current T has never been like this, but often I want to know that yes, I have a problem. I'm not just imaging things. I guess I have a lot of trouble trusting my own judgement.
Hope this helps with your thoughts.
Posted by terrics on January 17, 2005, at 11:34:08
In reply to Re: about having a dx or not » terrics, posted by littleone on January 16, 2005, at 16:23:52
Hi, I found your thoughts very interesting. I understand what you mean about wanting a dx, but on the other hand living up to the image of a dx. I have a dx of bpd and sometimes I think that there is really nothing wrong and that I took the dx and ran with it. Thanks for the response. terrics
Posted by CareBear04 on January 19, 2005, at 17:24:13
In reply to about having a dx or not, posted by terrics on January 2, 2005, at 10:43:36
hi terrics,
this is my first time reading your post, and i haven't had a chance to read the responses. i just wanted to say that i went through a two-year period of begging for diagnoses, anythhing to put into words and give a name to what i'm feeling. my first pdoc said, "diagnoses are good only for drug trials and insurance companies." it took me two years to find out that he was right. i think the DSM was designed to simplify people into labels so as to facilitate their treatment, not to limit it. there are many cases, like BPD or other diagnoses that scare pdocs off that really do hinder the quality of care that patients get. i've also sort of come to see the DSM as defining the parameters of what's considered normal. so outside those parameters can be those who fall short of normal functioning and also those who are more complex and maybe even more brilliant than psychiatry can understand. i think getting an accurate diagnoses always takes time, especially if your diagnosis includes something in the Axis II spectrum. my current pdoc said when we first met last year that you just get diagnose Axis II disorders like borderline in the hospital, because who doesn't look borderline or something under those circumstnaces and that kind of stress? my first pdoc asked that we stick to mood disorder NOS and not look to specify any farther. i wish more than anything that i'd accepted that and never looked to the DSM for answers that aren't there. we give a lot of power to the people who can diagnose us because once there's a diagnosis made and a paper trail in place, you can't easily shake the diagnosis. another pdoc i had recently-- it took 6+ miserable weeks of 3x a week therapy, just talking, for us to become familiar with each others' really complex thinking patterns. when we finally did, we had some of the greatest conversations i've ever had with anyone. if he'd seen me only in the hospital, though, and hadn't spent all that time trying to understand me or, for that matter, if he were in the hospital under psych care, we both probably would have been deemed pathological in some way or another when we are both actually high-functioning and complex and nuanced in our thinking.i would be careful in what diagnoses i accept. labels stick only as much as you let them, and if you get one that doesn't seem right, look further or stop looking at all and accept that you have problems that might not be DSM-definable.
hope this helps! i'm pretty anti-DSM right now because i think people are too complex to be shoved into labeled boxes when we're all different and most of us fall somewhere within the range of normal neurosis.
Posted by terrics on January 19, 2005, at 21:45:49
In reply to Re: about having a dx or not » terrics, posted by CareBear04 on January 19, 2005, at 17:24:13
hi carebear, you may be absolutely right about the dsm. my closest therapist was shocked when someone else labled me borderline. you are also right about the label sticking. when I got this 'delightful' label I had a 15 yr. old foster son who was robbing my neighbors, the grocery store, and then broke into a neighbor's house. the stress was nearly unbearable. i did yell alot, which he told the therapist and i cried alot. my pdoc calls me a soft borderline because i function fairly well, don't drink and don't call her in the middle of the night. unfortunately I think this label is correct, but sooo stigmatizing. no one should get this label. your doc was smart in giving you an all encompassing label. sure wish mine was so smart. terrics
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