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Myth or fact???
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Myth or fact???

I came to this forum to get some info from people who HAVE schizophrenia, as opposed to just reading medical articles which only give the "typical presentation/symptoms" of schizophrenia.

Is it myth or fact that if you're THINKING you may have schizophrenia, that you really DON'T??? I know everything I've read says that most schizophrenics aren't even aware there is anything wrong, & so it's their family who has to convince them to see a doc. I'm hoping this is TRUE, b/c then the very fact that I'm concerned it might be schizophrenia, means it's NOT. ;c)  I started having severe memory problems several months ago, and the bits & pieces that I DO remember, i have a hard time figuring out if it actually happened or was just a dream (b/c it's SO hard to remember that it feels like those dreams taht you wake up from & can only remember bits & pieces of). I have no problem realizing that any given moment is reality, it's just when I think back to things that have happened recently or conversations I've had, they get all jumbled up & don't make any sense (the bits & pieces I DO remember). I've had severe confusion too... where plain english doesn't make sense (I have a history of complicated migraines too, but that was 20 yrs ago). i can look at a sentence sometimes, & it seems like the words are out of order & not arranged in a coherent manner...if that makes any sense. ;)  The only symptoms that I think MIGHT match a diagnosis of schizophrnia, are that I smell smoke (off & on) that I have proven isn't real...b/c I smell it everywhere...& "everywhere" can't be on fire. I also talk to myself...kind of "rehearsing" conversations, but I thought most people did that. LOL  Other than that, the only things I have noticed since my memory problems is that I have lost my sense of humor. Sounds ridiculous, but the people that I know I always get their jokes, suddenly aren't funny anymore (things I see posted on Facebook, that people are laughing at & commenting on... I think to myself "where's the joke??? I don't get it"). I also have noticed that I have become hypersensitive to criticism, & I feel "slighted" by even my husband, family & close friends...when they didn't mean it that way at all. And I get offended so much more easily... I feel like I'm imagining their "slights". I think this could be just a reaction to my recent confusion & memory loss (b/c it's unnerving to not be able to remember daily things, so it COULD be a reaction). I also don't recognize familiar places/people, when I normally never forget a face OR forget a place.

My other concern is that it is something neurological like early-onset alzheimer's or parkinsons, something neuro like that (I have had muscle weakness for a few years).  Anyway, thank you for any info you can share, & thank you for letting me post my question. I wish you all the best in your journeys & in treatment.
Thank you!
~Kim
22 Comments Post a Comment
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675718_tn?1321008971
i have schizophrenia ptsd tardive dyskinesia and i agree with the memory loss ok :)
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585414_tn?1288944902
   Yes you are generally correct that when a person has schizophrenia before it is treated there is a loss of self awareness and awareness of the condition itself. Dementia in schizophrenia is rare and has many other features of schizophrenia as well and to my knowledge does not present itself as a sudden onset of memory loss. I have schizoaffective disorder and I have a form of dementia that is neurological and in clinical study so I can somewhat understand the difference. Some of the other concerns you are describing sound like they could be psychiatric but they might have other causes as well.
  Since you have had muscle weakness and other physical symptoms and are following up with a neurologist best to let them continue to rule all other neurological concerns out before making any further referrals as multiple sclerosis and many other neurological disabilities can cause mental changes. Also neurological and psychiatric disabilities can co-exist but the neurologist and psychiatrist need to be in touch with each other as mine are. However, only a physician would understand the clinical specifics but its essential to work with them so they can best understand how to diagnose and treat you.
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Avatar_f_tn
Thanks, both Drifter & Iladvocate, for your responses. I AM seeing a 2nd neuro & also asking my doc for a referral to a psychiatrist as well. At this point, I just want answers, and am prepared (I think) for whether it is neurologic or psychiatric in nature. I did see a neuro a month or so ago, but she played pin-the-tail-on-the-diagnosis & guessed at about 10 different possibilities, none of which she ordered any tests for (like the B-12 deficiency she suggested, or the hypothyroid tests...even though I had one last year that was normal). And thank you for the info that it could also be both psychiatric AND neurologic, & that I will remember to make sure both these docs are working together. I think 90% of me does NOT believe it could be schizophrenia, but then when I research the various symptoms, it s one of only a few things that keep coming up...so it got me a little worried. I am still trying to learn all I can, not just about schizophrenia but other disorders as well...so that maybe, no matter what happens, I'm as prepared as I can be. Thank you for your replies!  :)
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Avatar_m_tn
The smell of smoke is something I recognize. I started to get it in the middle of a delusion and it has taken on some special meaning in my mind since. I still get the odd whiff and for a split second I am linked back to that mind-space. When I get that I long to get back there and complete the "experience" but I never can.... I just get a whiff.

Memory problems, sense of humor loss, etc are familiar but to me are symptoms of brain damage that I put down to several bouts of AP's and their withdrawal effects. In fact I reject the medical model of Sz, especially "negative symptoms", which are in fact just chemically induced receptor damage.
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675718_tn?1321008971
i've lost my emotions cuz i have flat-effect
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3236191_tn?1355144215
I've had most of the negative symptoms from my schizophrenia before I ever took medication.
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Avatar_f_tn
Thanks for the comments. I am hoping that the smell of smoke is just a coincidence & NOT related to the memory issues. My doc treated it as a sinus infection (which I found out can cause it, although I've never had a sinus infection in all my 36yrs). ;)  And the fact that I "wonder" if I could have schizophrenia comforts me a little in what I've heard/read about the disorder... that most people who HAVE it, aren't AWARE that they have it. Although, I am a believer that things don't ALWAYS follow the expected course & present in the "expected way". But, I know that most of the time it is that way. But I have to say that this smell of smoke is going to drive me NUTS!

The sad thing is, it's hard for me to tell which are symptoms, & which are side effects of the actual symptoms. I know my moodiness & being easily aggravated can be a side effect of all that's going on. But the losing my sense of humor, feels like a symptom & NOT a side effect. And the only things I can see where that symptom is related is schizophrenia, alzheimer's, & possibly parkinsons (but usually later in the disease, I think, not initially). None of which I'm particularly fond of. ;c)  

My primary doc, before sending me home with an antibiotic & a referral to mental health counsellor (I want a psychiatrist who KNOWS what they're talking about & who can TREAT if something comes up, not some associate-degree "counsellor"!), told me that SHE'S had momentary lapses when she spaced out while driving & took a wrong turn, even though she knew it wasn't the way. I was like "sorry, but this isn't the same thing... I know wht THAT feels like too, & this ain't it!". ;)  I forget days at a time & don't remember ANYTHING for 3-4 days, I forget conversations I had just hours before, yesterday (what I remember) seems like it was 2wks ago, I forget how to use a gas pump!... that's not normal stress-related memory lapses. Oh, I almost forgot what side of the ROAD to drive on... I'm sorry, but when my memory issues start to put my life in danger (even though I ended up on the right side), it's time to get busy figuring out what the hell this is & stop calling it possibly stress-related. I have a few blood tests we're waiting on (B12, mercury, & thyroid tests), bt if all those come back normal, I don't know if I can let this go b/c SOMETHING is going on.
Thanks for your comments... & listening to me vent. ;c)
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Avatar_m_tn
Well I had some also. But they were more-like "depression" (which I also find to be just a word) and were only in certain area's of my life. They were more a choice, like I chose not to be interested in what others believe I should, etc.

The "negative symptoms" since are simply brain damage; an inability to focus on even the things I like, sense of humor loss because I literally just don't get the joke. These are two entirely different things. The problem is the broad labels.
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Avatar_m_tn
In answer to the main question, leaving aside what is "schizophrenia"...

When in the delusional state I had absolute belief in what I believed to be happening and the doctors all just became part of the story. So no, you don't have any idea you are ill.

Once the delusion is over and you have some time to put the pieces back together (and a functioning mind, no AP's) you become aware of what happened and the illness becomes obvious. The whole thing has given me massive insights into the workings of my own mind and also some of the delusional qualities that all people possess.
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Avatar_f_tn
So, MrB17, what you're saying is that there is a time, maybe after a particular episode (or length of time) that you DO become aware of things? My rational mind, in researching different symptoms, only a few things keep coming up as potential possibilities & schizophrenia is ONE of them. I'm not sure what qualifies as a "delusion", but I DO tend to talk to myxelf when I"m alone... kind of like rehearsing  a conversation with someone I know I will be having the conversation with later on. And the only hallucination I have is an olfactory one, where I smell smoke that isn't there. So far, that can only be attributed to a handful of things too... aside from schizophrenia, it only happens with Alzheimer's & parkinsons, & rarely as a migraine aura. But I smell it all the time, so it doesn't come & go like a typical migraine aura (b/c I have migraines from time to time, the aura anyway, & I have only ever SEEN the visible aura, which has never changed. But I smell smoke now, to the point that it makes me sick to my stomach... my brain REALLY thinks there is smoke, & my nostrils are even inflamed (as that's why the doc thought it could be a sinus infection b/c it was inflamed...but it WOULD be inflamed if it was getting mixed messages from the brain saying there was smoke when there really isn't).

Anywho... it still is on my list of possible causes, but I see an counselor or someone this week so will ask plenty of questions. I'm still a little worried about it being schizophrenia, b/c at this point it would be more treatable than early-onset Alzheimer's or parkinsons. ;)
Thanks for you insights. Can I ask how each of YOU were diagnosed initially? What kind of symptoms presented FIRST, & who convinced you to see a doctor? That's what I've read, that schizophrenics don't KNOW they're schizo AND that usually a family member has to convince them a doctor is even NEEDED, or they wouldn't go. I'm very confused.
Thanks so much for your insight & help! Truly!!!
~Kim xoxo
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Avatar_f_tn
Also, the fact that the combination of symptoms point to Schizo as one of the few causes. I have memory loss/confusion (the last few days are often NOT in my memory, neither are conversation I had this morning...& when I DO remember them, the convo feels like it happened 2-3 WEEKS ago..not this morning!). But so along with memory loss/confusion (time is all jumbled up & don't make sense), I also have the constant smell of stale cigarette smoke, even though no one in my house smokes, & no one I've hung around with in the last 6 months smokes either. I have established there is no ACTUAL smoke, thank goodness. But not very many disorders have both memory loss AND "phantosmia" (smelling smoke where it doesn't exist).
~Kim
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3236191_tn?1355144215
I didn't have a choice in my loss of the ability to do things before I took meds.
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Avatar_f_tn
What do you mean? And how did you first come to find out you had schizophrenia?
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3236191_tn?1355144215
I'm going to answer your question even though it was directed at someone else just because I think you could benefit from more than one person answering it.

I found out I have schizophrenia when I read about it on wikipedia and it sounded all too familiar to me.  I may have had some insight but I couldn't see some of what it said.  Then I eventually lost insight that I even had anything wrong and years later went to a doctor complaining of anxiety that I was mistaking for depression.  The GP diagnosed me with bipolar disorder but then after being referred to a psychiatrist, I was eventually diagnosed with schizophrenia.  Luckily the GP only thought to prescribe an antipsychotic for it instead of putting me on other medications I don't need.  I eventually gained insight again into what was going on with me after taking Geodon.

I feel I should also note that I've had symptoms since I was a small child.
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Avatar_f_tn
Thank you for your comment... I appreciate ANY insight anyone can offer. :)  Like you, schizophrenia only came up for me when I was searching possible causes for memory loss. And it definitely wasn't an "aha moment" like when I first read about ADHD (which I DO have). :)  I'm glad to be gathering as much info as I can before even seeing a therapist, since I have this fear that if everyone on the planet went to a psychiatrist, that they'd ALL be labeled with SOMETHING... anxiety, depression, bipolar, mood disorder, schizophrenia... you name it, & a psych-doc is going to think everyone has SOMETHING. ;)  And I don't want a label for the sake of having a label... I want to know what's wrong with me. And if a psych-doc tells me now that I DO have anxiety or depression, my response is: "of course I DO, I'm losing my memories which I've had control over until  now... of course I'm anxious & depressed...NOW". lol  But if it WERE something like schizophrenia/etc, I would much rather KNOW, & be treated, than go on NOT knowing. There DOES seem to be a misconception out there that if you suspect you are schizophrenic, that you really AREN'T. And based on your testimony, YOU became aware of it (even if you weren't 100% sure, or sought treatment at first) long before your doc did.

I'm very glad to hear a different perspective, & that it CAN happen that way (the patient becoming aware of it first). I have a completely open mind for whatever is going on with me. And yeah, what little I've read on the subject seems to show that most people have symptoms (if you look back) from when they were kids. Kind of like ADHD/ADD (I hate to compare it to that), in that I was only diagnosed at 25yrs old, but looking back, I DID have symptoms my whole life. But these symptoms I have now (the memory loss, confusion, & smelling smoke) have only recently started.

So, how are you, Schizofriendia, since getting treatment?
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3236191_tn?1355144215
It's a myth that no one knows they have it if they do.  That's only half of people with bipolar disorder and schizophrenia but in that half there actually is damage to the part of the brain that makes self evaluations.  I don't think a sensible psych worker would diagnose every single person out there with something, but I think there are the ones who would do so.  Although they say one in every five people out there have a diagnosable mental illness.  Schizophrenia however is what they call a diagnosis of exclusion in that they try to rule out a lot of other disorders which could cause the same symptoms before they decide to diagnose it.

I do much better when treated, but the medication seems to lose efficacy for me over time.  Right now I'm not doing too well and I'm trying to get in to see a psychiatrist again (I used to have a regular one but I've since moved between countries) but I think I could be doing a lot worse.
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Avatar_n_tn
Myth that become a fact for a people who has been suffering this problem. i am the one of those. you can make myth that become fact for other people like religious :)) . so whats point of thinking is fact or myth . i wish someone could solve this fact of sickness. I have been noticing small things  around me that is wasting my mind. I have been going through this several times without any result that i can solve my problem . i will tell you believe it as sickness more than believe it as myth or real fact. you do not understand what i have been suffering and also other people . believe me when you make this myth alive , every moment of life like someone torching you , i have been suffering this . accept it  as sickness and move on , after several times that i wrote and deleted i decided to post this one, t , i hope you could get what i want to say from my bad english . take care
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3248163_tn?1354851240
Well personally. I was diagnosed with Bipolar 1 with psychosis...When the hallucinations began, delusions of grandeur..and all that jazz I was 14, and too young to understand what that was. I was convinced that I had immense spiritual power and could ring in the apocalypse. I mean....I had a few voices in my head..ect. However, I did start suspecting something was up when I would come down from those trips. However...It was not until 19 I realized I could very well be schizoaffective. This was because I was put on a mood stabilizing dose of an atypical antipsychotic..and I was still hallucinating. They did not waver despite my mood symptoms vanishing. However I only find out im hallucinating because well...I know damn well the grounds not moving and the trees are not changing color...However I have some identifiable hallucinations along with ones I completely cannot discern until someone pounds it into me.

Ultimately, yes, I am aware I have psychosis.  Doesn't make the hallucinations any hallucinate-y..though. So personally, that theory is not ultimately true. Only for those who cannot get any clarity of mind or "down time" as I call it...it probably very well is.
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Avatar_f_tn
Thanks for your comments. I am very appreciate to get accurate information from those who are actually dealing with this.

To Alexde, I definitely understand your english, it's not as bad as you might think. :c)  But I do want to make sure you understand why I was asking whether it's myth or a fact (since you asked me why I worried if it was myth or fact). And that's because I had heard that if you ARE schizophrenic, then you aren't AWARE that you are schizophrenic/affective/etc. I think the information that people can read online needs to be updated because everything I've found (other than speaking with you guys)./.. they say that people aren't aware of it if they are schizophrenic. And based on my conversations with you all here, that is simply  not true. I was mainly asking just to put my own mind at ease, while I await my "report" on what' they think is going on with me. So I was hoping I could stop worrying about it being something like this, but it seems those cards are "still on the table". :c)

I have to say though, that I AM afraid that after 2 days worth of testing, including that awful 600-questions true/false one, I'm worried I'm going to be labeled w/ something psychiatric just b/c they haven't found the true cause of what's going on. THAT is what I don't want... if I truly have schizophrenia, or am bipolar, I really do want to know...so I can start treatment. But I DON'T want a label for the sake of there being no other label... you know? ;) So, I still worry a bit, but will hopefully find out this week what they think. ;)
Thank you for your comments!
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Avatar_f_tn
Um........ is there a translation for that post???? ;)
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585414_tn?1288944902
  Try using google translate.
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Avatar_f_tn
oh my gosh I smell the smoke toO!... my husband told me the other day that he knows i am sqitzy, but it never pass my mind...Until he said it... I told him I see things or I smell smoke I don't know where it's coming from I'm always thinking about weird things.. who knows but I will not get on medication I'm not too far off I do not think...lol
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