Dx change, now I'm confused

My pdoc changed my dx on my disability papers from Bipolar
1 to Bipolar 1 with Psychosis NOS. Now I am confused. I understand what that says but not where I fit now. I like to fit somewhere. Could I fit here, or where??? Any idea, anyone similar?

I think you could fit in here... schizoaffective disorder is someone who suffers from certain symptoms of schizophrenia, and certain symptoms of a mood disorder. So, you're probably on a similar spectrum to us guys... don't worry so much about "where you fit" though, you're on your own unique journey. I reckon however we can be fellow travellers through a similar landscape.

thanks, I am trying to tell myself it doesn't matter. It took me years to accept any dx. I reckon we can too. It overwhelms me sometimes trying to figure myself out. Right now I am a mess but I am hoping a cleanup crew will be coming shortly. New meds again so hopefully. Well then I will post here because I can relate to much of what is said.

It's funny, you say it's overwhelming trying to figure yourself out. That might be a really common thing. So called "normal" people seem to have no trouble figuring themselves out, or no need to try... I can't decide which.

I remember saying to my Dad, before my diagnoses was formalised, that I couldn't understand myself, and he was so bewildered that I'd say such a thing. He thought I was being overly "self referential", and that I should just stop being "melencholy" and "self obsessed." It was so painful, because I was trying to open up to him... and he was completely blind to my situation. I felt so lost, like I'd torn myself open from the inside, and I still couldn't see what made me tick. And he was saying, basically, that non of it mattered. "Just get on with it." Don't you think if we could we would?

I read people on this forum going through similar things, and I really feel for them... we are a mystery to ourselves when we're ill. Even when we get better we still need to examine ourselves, to make sure we're on an even course. Life can be so much more complicated and mysterious, and there are so few people who understand that.

So, when you come here, we do understand some of the struggle you have, hitting that mystery head on. Keep talking to us... we really can help each other.

My Pdoc often changes my DX from Bipolar mixed to bipolar I to Bipolar II...I don't get it.

mgran, I can relate. I'm sorry your dad did that to you.
My dad won't talk to me at all about it. We talk whenever I phone him, but conversations can never come close to emotional issues. That's just my dad. I love him, and though it hurts continuously, I have never known him to open up emotionally.

I figure myself out alone.

Hi Anika.
I think I'm in the same boat as you. (You grab one oar, I'll grab the other ).
I was eventually diagnosed with an ICD-10 code F31.2
Bipolar disorder, current episode manic severe with psychotic features

The mania didn't last more than just over a month approaching hospitalisation, and once the antipsychotics were in place, the mania was gone. But the psychosis stayed for a couple of months. I haven't seen my pdoc during that time. Somehow I don't think she will change my diagnosis, and quite honestly I don't particularly want her to - as long as I can treat any psychosis that comes along, and she assures me I can.

So I'm here with these good folks who have the SZA label because I find we can encourage each other - there is a lot of common ground.

Thanks Mgran, Tsunamisurfer, and Popeye,

It sure is confusing. I mean I know who I am, but I don't understand how my brain ticks inside. I have many medical issues too unresolved and many many tests that have come up NOS haha ugh I think that is why I am having an issue of not knowing.

I started having psychosis at 11, along with night terror. The bipolar hit in my teens, although I remember being very depressed as a child. I was dx with anorexia at five. That was a major control issue for me, still is. I have psychosis when manic but also when depressed and sometimes when neither. Or I might go a year with no psychosis at all. So I guess that is just what it is right there. It took me ten years to accept the Bipolar dx so I am having a hard time with the psychosis. I find a lot more stigma attached to it than even the bipolar or anorexia.

I told my parents when I was 11 but they were heavy into the church. They put their hands on me and cast the devil out. This is what they knew after all. I think I still have an issue with that. I turned from the church secretly at that point because "the devil didn't leave" and I knew something was actually wrong.

Well I am done ranting, and raving that pretty much sums it up very quickly. Thank you for listening.

I'm really sorry you had that church experience. I've had similar, but I was older at the time. It can really damage you that people are so foolish... what worse thing can you say to someone suffering from psychosis than that they're possessed by the devil? And then if the devil doesn't come out they start blaming the victim for not "trusting the blood" enough, or whatever.

I didn't turn from the church, because I can see there's a huge difference between Christians and Christ. But I must say I am a bit leary of it at times. Particularly the charismaniacs and their ilk.

"It sure is confusing. I mean I know who I am, but I don't understand how my brain ticks inside. I have many medical issues too unresolved and many many tests that have come up NOS haha ugh I think that is why I am having an issue of not knowing."

I know exactly how you feel on that note.

I had a T who was very Catholic and insisted I needed an exorcism. I listened to that for 2 years and it wounded me deeply. I already hate myself and feel like I am evil, to have a T convince you your possessed plays on that so much. I still haven't gotten past that. I am so sorry you went thru a similar thing.

wikidPissah, that is terrible, esp from a trusted T. I am glad at 11 years old I could tell that was not the truth. I am not against the church. I am against brainwashing. I hope you will find a way to get past this. For me I had a lot of heavy brainwashing, and it is still hard for me to get past, or out of my mind. I am sorry you went through that too!

You fit whereve ryou feel comfortalbe. Maybe sometimes you feel more comfortable sharing with bipolar people, people with schizoaffective, or people with psychosis/schizophrenia. I am a little confused about the bipolar I with psychosis NOS thing you were diagnosed with too, as in, shouldn't it be bipolar I with psychotic features if your psychosis coincides with mania only, or schizoaffective if your psychosis goes on its own? But then again I'm not a pdoc so I'm assuming your pdoc diagnosed you correctly. Anyway, post where you feel comfortable.

I get psychosis when manic, depressed, and in a normal mood, I think he's just trying to find out what's really going on. He is a new pdoc to me, I had a different one for many years. Thats just my guess . Confusing to me . It doesn't really matter I suppose as long as I am getting proper treatment . Thank you

This comes back to the question of what exactly schizoaffective disorder is.

John MacManamy has revisited his page on it and brings up a good discussion:
http://www.mcmanweb.com/schizoaffective.html

Thanks for the link. I'm gonna check that out.

That's kind of scary, Tsunami... the possibility that I've been misdiagnosed, over diagnosed, or just written off. I'll try not to think about it! To be honest now that the meds have kicked in my residual symptoms (or at least the ones that cause most problems) seem to be more schizophrenic in nature.

Mgran, I take a lot of comfort in the thought that the treatment is essentially the same, regardless of the label.

I guess the most difficult part for me is fighting off the false notion that the illness might actually not exist simply because there is instability with its naming and classification. And many times I feel certain it is all a hoax, only to be reminded very cruelly a few days later that it is horribly real.

This is what has been making me rethink my diagnosis of schizoaffective disorder for awhile. It seems outdated for me. I was diagnosed that at 15, when yes, I had a lot of depression, I was depressed nearly everyday and then also had hallucinations/delusions. By the time I was 19 I was only depressed rarely, like once a month sometimes less and not for long, maybe an hour or two in that day. Then I was having hallucinations/delusions everyday.

I found that pretty interesting, I am not surprised. Sometimes, I just chalk it up to "We don't know everything" otherwise I tend to get frustrated. I have been labelled for a long time and have grown fond of them. Accurate or as inaccurate as they maybe, I am childish sometimes.

tsunami, that's very familiar, the idea that it's some kind of a hoax, and i'm really okay, followed a few days later by horrible proof that it's real.