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I dont know where to put this, sorry if it's wrong- What do you do if you think you gave your past history wrong?


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Let me explain, because i think my question is weird.... i was originally dx'ed with Bipolar 1 by a tdoc, who witnessed me going from mild depression to what we thought was mania (because i was hallucinating). But, looking back, i dont think i've ever been truly manic, i've definitely been hypomanic, but i've never been so out of control i've done crazy, risky things, the most risky i've done is some overspending, but thats all. And made one or two bad decisions, but again for the most part i've been relatively lucid throughout my episodes, just euphoric.

But anyway, this tdoc "informally" dx'ed me, then sent me to a pdoc (one with whom she had spoken at length about me on the phone) who took a brief family history, then dotted the i's and crossed the t's, dx'ing me with Bipolar 1. Using my most recent "manic" episode as a benchmark, i concluded that i had been manic on several occasions in my past, and that i had been depressed a lot. I do have a history of depressive episodes, thats for sure. I didnt tell anyone about the thoughts being projected into my head, or the near constant paranoia, or the strange beliefs i held. I didnt know they were abnormal, and the ones that i suspected might be abnormal, i didnt want to be called crazy for, so i kept my mouth shut. I tried once to tell my tdoc about the thought insertion but she misunderstood me and told me it was normal, dont worry about it. So i kept quiet, kept going, and kept the focus on the Bipolar. I started seeing a new pdoc, who had a letter from my original pdoc confirming my dx etc.

Since then, the psychosis got worse, really, truly worse and i went from the constant mid- high level psychosis (that i was ignoring) to high level all the time. At this point my dx was changed to Schizoaffective, which definitely seemed to make more sense.

Thing is, over the years i have learned a lot about mental illness, and i realized 2 things about my past:

1) My "manic" episodes were only hypomania, and a lot more spaced out than i remembered them being (my memory is crap, i've been piecing bits together with my Mum, which is in part what triggered this post).

2) Although i did suffer from terrible depression, a lot of the time i wasnt depressed, i was suffering from apathy and avolition, but i just assumed i was always depressed, which wasnt the case. I didnt always feel depressed, and had no depressive symptoms at times other than the two a's.

I asked my mum if she could remember me acting depressed or manic, she said she remembered me being a bit low sometimes, but she said the thing she noticed most about me was how withdrawn i was, and how sometimes i would just jabber on about random crap, jumping from topic to topic. Not pressured speech exactly, just a lot of random talking. Also, looking back, im shocked to realize that the one thing, the constant, was psychosis. I would be delusional for months, even years at a time (book and movie characters would literally talk to me in my head, like i wouldnt be imagining them talking to me, as far as i was concerned they WERE talking to me, their thoughts were coming into my head). I would be literally unable to pull myself away from the world of a book or tv series, i believed i came from that world, and was visiting this one (and that wasnt just as a young kid, it still happens to me now and im 29!!). Etc, anyway i could give a million examples but this post is already long enough.

My point is this: knowing now that the history i gave was not accurate, what do i do? My dx thus far has been based on the experiences and history i gave my shrink, now what do i do? What if my dx is completely different? It doesnt help that my husband wont hear of anything i've said here. He thinks im "forgetting how bad it was" now that im on medication and stable. So i dont even have his support in talking to my pdoc about it. Im kinda lost right now.

You have my sincerest thanks if you are still reading at this point!!

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Um if you are stable and doing better and the meds are working does it matter if you were dx Bp at one point? I mean you could mention it, I guess, to give your pdoc a complete picture, but it may change neither your current dx, nor your dose regimen, really. That's between you and pdoc. A lot of people are misdx initially, it's not such a big deal.

Anna

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First of all, you can reassure your husband. Afterall, you are not rushing out to stop your lithium/lamictal cocktail. So just tell him to chillax. Of course you need to tell your doctor about these serious symptoms. You need to tell your doctor so they can treat it. And treating your serious symptoms is what is important. Not what they call the DX. So, next appt just tell your doctor the truth.

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Guest Vapourware

Just my opinion, and I'm just some random from the internet so take this with a grain of salt - if you have had some hypomanic episodes and depressive episodes, that would already entitle you to a BP dx of some sort. You don't necessarily need to have full-blown mania in order to have a BP dx. You've noted the psychosis occurring all the time as well, so it sounds like schizoaffective is probably a good fit for you right now.

Also, sometimes people get dxed different things according to a doctor's bias and/or interpretation of your symptoms. My first pdoc had me down as BP with psychotic features for a while, and dismissed the concept of sza out of hand because I was, amongst other things, "too high functioning". My current pdoc is of the view I'm sza because he believes I've had psychotic episodes outside of mood episodes.

I guess the most important thing is that your current treatment is helpful to you, and it doesn't really matter what the label is - or what labels you have received in the past. As Anna noted, people often get lots of different dxes before arriving at the one that works for them.

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You say that you suffered from psychosis and have had hypomanic episodes and possibly depressive episodes. I think that a pdoc could reasonably conclude that you are suffering from schizoaffective disorder. It doesn't matter what your past diagnoses were.

The important thing is that you are getting the correct treatment. This is more important than the diagnosis. And from the list of meds in your signature, it seems like you are getting the correct treatment.

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I think im more scared of being overmedicated than i am of the diagnosis... The only reason i worry about the diagnosis is because of it affecting treatment. Im on pretty high doses of mood stabilizers, and im scared that im taking too much based on the info i gave him.

As for correcting him about my past, he barely listens when i talk about my present (his response to my recent major psychotic episode? "well you didnt go to hospital and you dont need to go now, so what do you want me to do?" uh, your job? I dunno, maybe im being hard on him...). Im considering seeing a different pdoc anyway (2-3 hour waiting times every time, for a routine appointment? Not as much fun as it looks!), so if i do, i might ask for a second opinion, giving him/ her the stuff i've remembered along with everything else, see what they think about my treatment etc.

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I think im more scared of being overmedicated than i am of the diagnosis...

I think what's important is that you are on the amount of meds that manage your symptoms. If you feel that your not having severe mood issues you may want to talk to the doc (or the new one) and see if you can come down on them.

Likewise, if you are still having psychotic symptoms you may want to mention that also, but far past history should not really make a hill of beans. What's important is current symptoms, medications tried to manage those symptoms, current medication side-effects.

EDIT: You can't treat your past!

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I'm sorry to be the bearer of bad news, but your husband is probably right. Great insight is really not part of either mood or psychotic disorders. What you told your providers at the time was probably more accurate than your current memory of things. If you want to discuss it with your pdoc or tdoc, there's no reason not to, but I doubt much will come of it.

If you're still experiencing psychotic symptoms, it actually sounds more like you're currently undermedicated, than anything else.

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Over the years I have told different doctors different things. And as a result my dx has been a few things (see my signature). Nothing that I said was false, but it was always incomplete (and still is now, current pdoc knows nothing about my thought broadcasting or my random hallucinations simply because they did not seem relevant). But early on, like when I was on AD, I mentioned nothing of my psychosis because it did not seem as anything other than just what was making me anxious. Eventually it was only my desperation to block out the thought control that I was diagnosed with psychosis NOS, which much as I hate to admit it is probably the most accurate of all my diagnoses. For me, I would say that poor insight was what held me back from giving all the information.

Anyway what the others have said makes a lot of sense. The combination of depression, hypomania, and constant psychosis does seem from what little I know to add up to a schizoaffective diagnosis. So it is probably best to not worry too much about this. But if it does continue to worry you, just be honest about how you feel now to your pdoc.

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Current status is more important than past

I agree. I don't give very much importance to past diagnoses. The illness changes with time and the symptoms will present themselves differently over time. Ask 3 pdocs what you have and you can get differing answers. That makes trying to draw a conclusion, based on what 3 pdocs have told you in the past, difficult.

nf

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