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Very confused about my diagnoses and symptoms


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I am at a point where I can't really find any answers, because there does not seem to be a lot of people who are in the same place. Many people fit nicely into schizophrenia, bipolar, etc. but I really am having a hard time figuring out exactly what is going on with me. I grew up with some trauma, giving me a mild case of PTSD. All my life I have shown signs that I am obviously Asperger's. I always had really bad social anxiety in combination with severe depression, but I didn't really show any signs of anything too "out there" because anxiety and depression can result from having Asperger's. Eventually when I got into treatment I was diagnosed with Asperger's. After a while I began showing symptoms of delusional thinking and mild paranoia. I ended up being diagnosed with paranoid schizophrenia. When I was there I also had a very intense hypomanic/borderline-manic episode, but nobody really picked up on that, so I was never diagnosed with any bipolar disorder. I didn't know what mania was for a long time, but after I began experiencing it more and did a lot of research, I immediately figured out that I have been having hypomanic (not usually full-blown manic) episodes since I was young, and right now they are getting more frequent and more intense. I don't really get depressed anymore (probably my meds doing their thing). Eventually I learned about Schizoaffective disorder and felt that it fit me more than bipolar or schizophrenia. I was actually diagnosed with schizoaffective depressive type, and only recently have I decided I am definitely the bipolar type. 

The one thing that has made it hard for me to get the right diagnosis is that for a while I was using drugs regularly. I had a bad addiction issue, and it has made doctors question my diagnosis and my symptoms. People have told me that my "psychotic" thinking is probably from drug induced psychosis. I know for sure that the hypomania is not from drugs, as I can remember getting like that long before I even tried pot. The problem is that even when I am sober, I have some issues. I was in treatment for many months off drugs before I even had some "psychotic" symptoms. So I am pretty sure that a lot of it is not directly from drugs, though I can say that drugs have affected my symptoms. I've heard some people say that drugs don't necessarily just make someone have a manic episode or psychosis, rather it increases the chances of someone bipolar or schizophrenic to display symptoms. I don't really know if that's true or not. But one thing I know for sure is that I am VERY good at identifying my symptoms, and differentiating effects of different drugs. There is a big difference between sober mania I experience and when I am on speed and it makes it seem like I'm manic. So I am pretty sure a lot of the symptoms I experience are legitimate and not necessarily directly caused by my drug use.

 

The thing that REALLY makes it hard for me though is just how "mild" my symptoms seem. I show lots of signs of psychotic thinking, I obviously get hypomania but hardly ever full-blown mania. But the thing is most people haven't really seen me in those states. I have periods where I am completely fine and most people wouldn't even guess I have schizophrenia or bipolar. The only diagnosis I am %100 sure of is Asperger's which affects my everday life. But back to my psychotic symptoms. I don't have hallucinations like many psychotic people do. I have delusions, but they usually aren't so huge that they make me unable to function like others. After having delusions and getting back to a more stable place mentally I am usually able to realize when something is a delusion, and this is backed up by the fact that even though I realize that I still have the belief. I just am really frustrated because my symptoms aren't intense and obvious enough that I can immediately say if I am psychotic. Not that I wish they were, I just think it'd be easier for me to identify with being schizo if I would have some full-blown voices or something. Some of my delusions have to do with feeling like I am a prophet or Messiah, and a belief that I was sent to this world to spread truth, occasionally (and I think Asperger's has to do with this) I have trouble interpreting people's words or actions to a point that I start believing they are mad at me, or dislike me, and when that happened I thought it was probably an Asperger's thing, but then it got to a point where I started believing they were talking about me and trying to get everyone to go against me, only to later realize that they like me still and weren't talking about me or anything. At one point I was under the impression that there is an Illuminati and they are in contact with demons. I've always been suspicious of the government and feel like they go out of their way to get rid of people who can expose them, making me a huge target. I always have been prepared that if I was going to speak my mind they really would attempt to try to get rid of me. Not like just come and KILL me or anything. I believe in a few conspiracy theories. I believe in a lot of very abstract philosophical and occult concepts, and I sometimes get to a point where I've figured out very important solutions to problems in life. At one point I felt that these beliefs stemmed from the fact that I had Asperger's and felt alienated from people, so I developed a way of thinking that was very oppositional and my ideas of the majority's intentions were a direct result of how just some people treated me. I know a few of these seem like obviously delusions, but I could see these developing before I even became "psychotic". I don't doubt a few of them really ARE delusions, I just haven't seen them effect my life in such a huge way that I never really felt too seriously about them. I guess maybe to me it doesn't seem so bad, and maybe it's worse than I think, but compared to many people with schizophrenia and mania, I have it pretty easy.

 

I am just having trouble coming to terms with the fact that I could likely have schizoaffective disorder, but all these things, such as the drugs and not having incredibly "intense" symptoms that many with it do, makes me feel like I may not be. And the other thing is that I DO display some symptoms from both bipolar and schizophrenia, but there is many things that I DON'T display, a lot of symptoms that make people look at someone and say "he's schizo/bipolar". And the ones I do display are not too dibilitating. I recover fast from delusional thinking and mania. I have periods where I don't seem to have any symptoms, and when I do they are not that "crazy". Sure I can say some things that people will think is kind of "crazy", but I never really have ideas that people are going to kill me, nothing of that magnitude. I mostly just have delusions of grandeur, which I originally attributed to narcissism or mania. And the thing that makes me slightly doubt the diagnosis is that I don't have full blown HALLUCINATIONS, not even voices or anything. I am not asking anyone to diagnose me, but I would like some input. Does anyone else here have experience with having "mild" symptoms and not having a lot of the hallmark symptoms that usually comes with these disorders? I feel like if I do in fact have schizoaffective (and I think if I have anything it's that) it's like a "high functioning" version, the way Asperger's is to autism. When I look back at times when I get delusional or manic, I am more likely to agree with the diagnosis, but when I am able to go so long without having any symptoms whatsoever, I begin to feel like I don't have it. And my drug use (which I have STOPPED NOW, for about 50 days) makes doctors feel like they can't diagnose me properly. I do think the drugs probably contributed, but I don't think they CAUSED it because I can have symptoms even when I'm sober, and I have had hypomania since before I started using. Anyway, SO SORRY FOR WRITING SO MUCH. You should be glad, if I was still in a manic phase I would have wrote like 10x more! Perhaps I am still "coming down" from the episode? Ok sorry, I'll end it there.

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John, welcome to Crazyboards.  I don't moderate this forum, but I like to read posts written by new members so I can get to know them a little bit.  You could help us all out if you could use the Edit feature and break up your big paragraphs into shorter ones.

 

Many of our members have learning disabilities and AHDH and other conditions that make it difficult to read big blocks of print.  We do okay with shorter ones. :)

 

I'm glad you came here and I know our other members will join me in welcoming you.  I hope we can offer you some information and support.

 

olga

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I'm sorry.  What Olga said about spacing.  I can't read the whole text and I want to.

 

You say you don't want us to diagnose you; I'm not sure what you are looking for.  Yes, drug use makes it hard to determine an accurate dx and pdocs like you to be off of them for a while before diagnosing.  I'm not sure how long. I see you are on a number of medications; have you asked your prescribing doc any of this?  I don't always remember what I want to say so sometimes I write my thoughts down.  You don't have to have hallucinations to have schizoaffective disorder.

 

Maybe you aren't noticing symptoms as much because your meds are working?  I have schizoaffective, bipolar type and I haven't had psychotic symptoms in years, but when I did I was not functional.

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Welcome to the forum. I don't know any thing about Asperger tho they sound more intelligent then me :)

 

I can relate to schizoaffective and bipolar and honestly tho I been diagnosed w/BP I could very well be schizoaffective as I am not entirely sure my psychosis is dependent or independent from my mood disorder. It doesn't really matter as there seems to be little difference between bipolar with psychosis and schizoaffective. 

 

Do try to make your paragraphs shorter and spaced, we are not all Asperger's here :)

 

The drug thing is a problem and major complication and challenge for doctors. It's difficult to determine if the symptoms are from drugs or MI or if one caused the other. Often it becomes a which came first puzzle, the chicken or the egg. So it's not suprising we get confused reading all the information. It's actually harder for us to self diagnose. 

 

I suggest starting a journal! It has helped me greatly! Here is a free one you can download, http://www.findingoptimism.com/

 

I think a journal is a great tool for all of us!

 

Good Luck to you!

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I had some trouble reading your post too, but from what I read, I can pitch in some input. 

 

I have schizoaffective disorder, and I don't usually hear voices or have particularly intense hallucinations either. I've had a couple really scary, full-on people hallucinations, but it's so rare for me. And I've only heard voices a few times. Most of the time when I hear voices, it's just a distant murmur. 

 

Hallucinations are not somehow more important that delusions. I struggle a lot with paranoid, bizarre delusions as my main psychotic symptoms. 

 

Also, I go through periods of wellness when no one would guess I have schizoaffective disorder either. That's actually the nature of bipolar disorder, to go through periods of illness and periods of remission. 

 

I will reply more when I get the stamina to read your whole post. :) 

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The text is hard so my comprehension might be sloppy but from what I could gather I really empathize. I dont think most people fit in those neat boxes the more you look at a person and when you indirect yorself on a microscopic level all the time it gets even more confusing and it will cause you a lot of unnecessary tension. I was really driven to make sense of my dx as well for a long time because I was called depressed, complex ptsd, autistic, and bipolar all in the same year. Everyine had a different opinion. Other doctors actually refused to disclose a dx to me, said things like my head needed to be glued together and so I had to take medication.

when I was diagnosed bipolar it was the first time any psychosis was told to me, that doctor said he wasn't completely sure because I was in the hospital for a short period and told that sometimes symptoms are so complex that they need to be untangled. After that I left thinking that diagnosis will vary depending on how much untangling a person is doing, especially when there is overlap like there is withmost of psychiatry.

schizoaffective diagnosis came about when I had an acute episode that was obviously psychotic. I had no mood at the time but I have a long history of it in my file. Much of my diagnosis came from reviewing my whole file. I still dont know if I "am" schizoaffective, hence coming here sometimes to see if things resonate because I'm confused still too, but I think symptoms speak louder than the exact diagnostic lable.

My pdoc does my paperwork schizoaffective but she doesnt use the word with me. She just says I have chronic psychosis, she is careful not to use the lable on front of me, I personally dont think it concerns me. I think the name itself is not as important as finding the treatment that will give you relief. Sometimes even medication can help diagnose, such as my hypomanic reaction to ssri's which led to the bipolar diagnosis, or my success on antipsychotics validating psychosis. I think having an open discussion with your pdoc ot tdoc would help, that way they can tell you their justification for the dx. But in the end, its the treatment that is most important, although I know the name can provide some insight and closure after a long time of confusion.

I also dont present like a sick person or anything, people think I'm fairly normal, just very private and reserved. I put a lot of effort into keeping it together, no one thinks anything until I accidentally have an episode around others and it confuses them becayse I really do present well. I go through periods of doing okay, like I am right now, that fluctuating was one reason bipolar was suggested, I wax and wane. My symptoms are not severe as others, but it rests on a spectrum. More severe than some, less than others. I dont constantly feel as debilitated as I do when it gets bad but its still a daily struggle in its own way, the outside doesn't always know that though. People see what they want to see, they think the best of a person. No one thinks I'm on disability or struggle with things outside of universal anxiety unless I choose to confide that. When I was hallucinating and injuring myself daily, only a select few EVER knew. We dont really have it stamped on our heads. Hell, I met a severely ill schizophrenic in the hospital who presented very well, I didnt know anything was not well with him until he was transfered to a more secure unit. my pdoc says there are many faces to psychosis. I think that is really pertinent to this discussion...

Sorry if I'm not very helpful but I empathize and wish you luck

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I tried to read your story to the best of my abilities. Anyway, I just would like to say that falling into a specific diagnosis takes a lot of detective work. Many of us seem to have gone through multiple diagnosis, leaving us confused and frustrated. I've gone through a list of various disorders and been trialed on so many medications that I've lost count. For me, it all depends on which doc you talk to. I've learned that having a label isn't necessarily important as finding the right treatment(s).

 

The drug use can also hinder finding a proper diagnosis. I would strongly suggest refraining from such activity and get things sorted out.

 

You should also mention your concerns to your provider. At least that way you may get some kind of definitive answer. I wish you luck in your journey for answers.

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I know how you feel about having "mild" symptoms. I do as well compared to what I have seen in mental hospitals and the streets. I've been in the hospital 10 times in my life. My voices are extremely mild compared to others, even in an intense episode. I get command hallucinations, the worst kind but only a few commands a day. I also hear random voices. I know you mentioned you don't have hallucinations (voices or seeing things), but its not an absolute requirement to have them for schizophrenia, even though greater than 70% do. Its interesting you have Asperger's Syndrome. I have high functioning autism. There are times that I appear "normal" to others, that they don't notice the symptoms of anything I have. It was hard to read everything because my comprehension level isn't that impressive, and neither is my reading (due to cognitive symptoms). I don't present normal for schizoaffective disorder, unless I am having a severe episode. Its more on the mild side right this second, just background hallucinations. Its been all year long with varying intensities. In fact mine presents so differently that people are suspicious of me, not believing me. Most of the time I can have a coherent sentence, but while other times its word salad (total incoherence). Finding a proper diagnosis is not immediate, it can take years. I've gone through a billion diagnoses over a long period of time. But the most agreed one is schizoaffective bipolar type. To have a schizophrenia spectrum disorder, you have to either have hallucinations, delusions, disorganized speech or behavior, catatonia or negative symptoms. Negative symptoms are anhedonia (lack of pleasure), poverty of speech, lack of energy, flat affect, etc. Cognitive symptoms are now being more understood. When I first developed this, I didn't have as many cognitive symptoms as I do now. I do have early onset schizoaffective disorder, signs at 11. The cognitive symptoms are such things as memory loss, hearing people say different things than what they actually said (auditory processing problems), reading comprehension, being able to figure out things, (actually some of this can lower your IQ score but in real life its the illness doing it, you probably have the same IQ, etc. Sometimes I write too much as well. 

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