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The dangers of misdiagnosis

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by AvantGarde » Thu Feb 23, 2017 10:52 am

I've had a very interesting conversation with a pdoc today that explained some basic rules of diagnosing to me. Not my pdoc, haven't talked to her yet about this, but will next week so I'll update with what she says here next week.

(As some of you know, I was misdiagnosed with schizophrenia and then later with schizoaffective disorder for two years. This led me to not give a crap about the freaking label, all I wanted was to be treated. Now I found a good pdoc that gave me the right diagnosis and treatement.)

Since then, I've been focusing in understanding a number of things my old pdoc got wrong, between them the concept of psychosis and voices. So as this pdoc, who I encountered today and explained my situation to, explained to me, psychosis is only diagnosed when a person is out of touch with reality. Other than that, there is no such thing as psychotic thoughts that we realize they aren't real, only ordinary out of touch thoughts that everybody has. It's perfectly natural, even more so to doubt oneself given we are mentally ill and doubt our thoughts a lot. This not to say I don't have psychotic features, I do have them when my moods are too unstable, but I've been clear of them for two years now. My old pdoc told me I still suffered from delusions and that his primary concern with me was my psychosis, delusions and voices. I haven't had a single delusion in years, according to this person. Questioning my spirituality is not delusional, that's the only thing I had since I came out of my deep depression two years ago.

I was told that my inner monologue were voices, they aren't. They are perfectly natural, some people have more than others, others don't have them at all. I have a very rich imagination, that is easily triggered, so I make up conversations in my head. Sometimes they would say insults, and as I thought they were voices I would be running to my pdoc to increase my AP so they would disappear, and they would, but not because of the AP, because they weren't voices. They weren't talking to me, it was me talking to myself. Years of being told that I had voices, led me to question my sanity so badly that I thought I was having symptoms that I didn't have.

Voices are auditory hallucinations, not thoughts. This was made very explicit by the pdoc with who I talked today. According to him, some pdocs (maybe because of stigma and encountering other frightful people like me) agree that the inner monologue that a lot of us have in our minds are psychotic, but they aren't. That's why, even on the highest dose of my AP they didn't disappear. It's my inner dialogue.

A lot of healthy people have a richer inner monologue than me, they make up worlds, talk to themselves, and actually hear voices as if they were "from the outside" of their heads, but they're healthy. Not my case, I have a rich imagination, but it's limited.

When I was in fact psychotic, I thought I was telepathic, which is very different from hearing voices, and became paranoid that people wanted me dead. This pdoc says those were delusions and paranoia, not voices since I didn't hear anone say anything.

I'm still incredibly angry with my old pdoc, I was a victim of negligence and stigma to a point of it becoming completely unbearable to deal with my symptoms. The only good thing that came out of this was that the AP I was taking is also used for BP so my symptoms were not so severe, but still present.

The dangers of misdiagnosis are very serious. I'm coming out of a situation that is completely unnacceptable, not only because I complained about my moods on every appointment I had with him, not only because he neglected to see me more than every three months, but because his own stigma and prejudice clouded his judgement of what my symptoms really were. The last time I saw him, he continued to insist that my psychosis is my worst symptom, hence me having schizophrenia.

To most of us, the misdiagnosis is depression (I was actually first diagnosed with depression, that I didn't seek treatment for), and we go years and years trying meds and dealing with labels that don't fit us. Maybe depression is easier to swallow than BP or SZ but still, it's unnacceptable.

I'm angry.
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by Pancake » Thu Feb 23, 2017 12:18 pm

AG you are amazing. And you should be angry, you not only lost time but that sounds like he made you worse.

I think I'm a little bit in love with the pdoc you met today o_O
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by AvantGarde » Thu Feb 23, 2017 12:37 pm

Thanks Pan, and :lol: on the crush, I just wanted to hug him.

On another forum a psychologist told me just now that what I thought were voices and the disconnection with my inner monologue and giving them identities can appear in dissociative disorders. I have chuncks of memories I forgot, and I did have dp/dr for a while there.
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by Mocha » Thu Feb 23, 2017 4:26 pm

AG wrote:The dangers of misdiagnosis are very serious. I'm coming out of a situation that is completely unnacceptable, not only because I complained about my moods on every appointment I had with him, not only because he neglected to see me more than every three months, but because his own stigma and prejudice clouded his judgement of what my symptoms really were.

I related to every word. Very unacepptable indeed, especially when a pdoc allows their own stigma and prejudice cloud their judgement.

Not cool at all.

Before I was correctly dx'd, I had an idea I had bp. I kept bringing it up with various pdocs and tdocs. They blew me off, said it was a major/serious mental illness (duh...ya think...:roll:.), and wouldn't even consider it despite the obvious symptoms. Keep in mind, this was back in the day. The 80s.

Finally when I was doing therapy with an awesome tdoc, he saw it right away. That's when I was dx'd and started on meds.

But all those years of ms dx caused even more probs in my life. More damage, more hurt to me and people I cared about/loved. More lost years/relationships that I could never get back.
Assholes...... :evil:
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by AvantGarde » Fri Feb 24, 2017 12:29 am

I understand Mocha, it's so frustrating.

When I was still a kid, around 13 years old I started developing symptoms. I went to a psychologist that didn't diagnose me with anything. Then later at 18 I went to a different psychologist, back then I was having extreme symtpoms, I asked if I should go to a psychiatrist he said no. I didn't really trust him. I stopped going there after a while, it was psychoanalisys, really screwed me over.
All of the mess could've been avoided then.
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by Mocha » Fri Feb 24, 2017 11:32 am

AvantGarde wrote: Then later at 18 I went to a different psychologist, back then I was having extreme symtpoms, I asked if I should go to a psychiatrist he said no. I didn't really trust him. I stopped going there after a while, it was psychoanalisys, really screwed me over.

I'm not surprised to hear that.....
Damn Freudians and their theories......:roll:.....

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by AvantGarde » Fri Feb 24, 2017 11:45 am

In complete agreement. First thing I asked my current tdoc was if he followed any freudian theories, he said he's not a fan I was instantly pleased :lol:
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by Mocha » Fri Feb 24, 2017 11:57 am

AvantGarde wrote:In complete agreement. First thing I asked my current tdoc was if he followed any freudian theories, he said he's not a fan I was instantly pleased :lol:


:lol: :lol:
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by BillyGoat » Sat Feb 25, 2017 7:34 am

Brilliant rant, truly inspirational. Might have to find out if I can still give awards...

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by AvantGarde » Sat Feb 25, 2017 7:36 am

Ahah! How I've missed your awards. I started ranting expecting you to come back to award me :lol:

You may ask me anything... well not anything, be careful :evil:
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by BillyGoat » Sat Feb 25, 2017 7:46 am

This was the thread I wanted to come back to find.

Experience and courage.

Well done AG.
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by AvantGarde » Sat Feb 25, 2017 7:53 am

Thanks BG. I think one has to be trully angry for it to come out right :lol:

Glad I could make you feel more at home though :)
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by AvantGarde » Tue Feb 28, 2017 12:51 am

So, I talked to my tdoc about my inner monologue and how it was percieved as psychotic by my previous pdoc. He said it was a 'breakthrough' on my part to be able to rationalize my worries into something completely natural and not be afraid of the inherent parts of myself, that all of us have inner monologues and that he is very happy that I'm finally being able to accept it and not freak out about my thoughts.

We had a very good talk, he tought me some coping mechanisms for when my inner critics start rambling how I'm not good enough, feeding on my insecurities.

Also, good point to note, is the ability to be able to express them as part of myself and not exterior to me. If I attribute them to outside forces I'm not valuing myself as a complete person. He also said that we all have different "alter egos" inside of us, we're multiple persons depending on the outlet we're given, and that putting a label of psychosis into that is dangerous, as it can mute the inner dialogue by excessive medication and being afraid of the multiplicity of ourselves.

This all sounds very cliché, but it's something I've been struggling with for a very long time.

He agreed that my perception of what I called my "voices" were altered by the dp/dr part of me, that the fact that that subsided it has given me the ability to look into myself in a more healthy way and not accept any alternative fact given by outsiders. That I know myself best, and I shouldn't take my own appreciation of myself for granted.

He also said he will discuss this with my new pdoc, and that I should do the same just to be sure.

He mentioned he didn't want to go against my old pdoc by saying they weren't voices, and he was very happy that we've finally been able to cross that barrier into a more suitable approach for my issues. They were non issues that were dealt with for far too long.

Tomorrow I have my pdoc appointment and will communicate what she says about the so called "voices" and from where they can originate.

Thanks for reading.
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by MsSupial » Sat Mar 25, 2017 2:09 pm

Dude. I am so so so excited for you. Fucking asshat, telling you the opposite of what your soul told you was true! And now, a total nonasshat,((not sure thats a word?uh, I mean it as a compliment to new Pdoc))who tells you Yes, your spirit is valid. The dangers of misdiagnosis are huge, & dangerous, to ourselves & our loved ones. I was misdiagnosed after my first beautiful kiddo. It could have been tragic, to be told "you are just a little blue, heres some valium" when actually I was post partum psychotic and BP. Luckily, I did a find good Pdoc. But dude heres the thing I wanted to tell you today---I saw my Pdoc yesterday. And I was freaking outbcz i thought i was hearing stuff again, like audial hallucinations,& she had me explain exactly whst it was like. Which um for me is like Im walkingy dog & I hear voices, conversations, but I never see people. And she explained to me that all kinds of people hear stuff all thevtime! Just in our heads, or audially! I WAS ALL, HOLY FUCK BALLS, REALLY??!! Bcz every dr I have ever had, has used AH as "the" big symptom.
So, that was great to learn. Also great to learn my Pdoc laughs when I scream HOLY SHITBALLS! Bcz that one coulda gone either way.
Any way, Ant (best new nickname ever), CONGRATS. You are working hard n it shows.
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by AvantGarde » Sat Mar 25, 2017 10:21 pm

Thanks Marsupial :D Yeah it's true, lots of people hear voices or have whole conversations in their heads like me, doesn't automatically mean psychosis.

Glad your pdoc is good to you :D
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by Lisa » Sat Nov 04, 2017 5:32 pm

Finally found this biotch again :/

Found it, wrote a book, saw the thread was months old, deleted what I'd written, and moved on. It kept bothering me, so I found it again LOL

AG - magnificent thread, it really moved me.

I was reading up on BP, psychosis and the like and got a bit spooked. After a bit, I thought, FK it. FK the labels, the variations, and whatever else. If I have a conversation with myself, in the shower, in my car, if I'm preparing myself for a conversation with another person, if I just flat out argue with myself in order to complete a task, WTF does it matter?

I'm a bit damned tired of doubting myself. I was damned near 50 when I was diagnosed, I have had a couple of breakdowns [didn't know that's what they were], spent a month in a MHF, and I'm still kickin. I'm still doing what I love, still appreciated, loved, and accepted. I'm learning about BP a bit at a time, but I hate how the labels restrict us.
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by AvantGarde » Sat Nov 04, 2017 10:54 pm

Glad this could be of help, Lisa.

Old thread, but still applies. Although I now thinkg the biggest danger of a misdiagnosis is the stigma (and self stigma) it carries, really, skewes all the notions about what's going on inside our brains.

Since the BP dx, I've been treated like a competent person, was able to go back to work, am working on going back to college, have a more active social life, interests, etc.. None of this was happening with the schizophrenia dx.

Old tdoc (mentioned in this thread) turned out to be quite dangerous for me, so I ditched him and found a new one. She's great and has been helping me organize my ideas about my mental health, very accurately. We toyed with the causes for my dissociation that old tdoc all of a sudden refused to aknowledge for some reason, rulled out DID (reason for "voices" and drastic changes in personality) or another dissociative disorder and went back to PTSD. Also, talked about Borderline symptoms in the past, attributed now to substance abuse that was also rulled out months ago and is now back on the table.

Working on self care right now, and I've been doing really well. Haven't had a nightmare in weeks (had them almost every day for months) and have been sleeping well, mood is stable, eating well and moving around, losing the weight I gained with meds, and more stuff. So, things can get better :D

While my life still has it's problems, stuff just doesn't affect me so much right now. Far less angry and less of overthinking things as well.
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by Lisa » Sun Nov 05, 2017 5:57 am

Enjoy it AG, from what little I know about you, the peaceful heart is well deserved. =]

P.S.
Keep us updated and post any revelations ;)
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