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Anyone else been misdiagnosed?

26 replies

bumblebee39 · 07/12/2018 16:51

With BPD/EUPD when really it was Bipolar?
Tia

OP posts:
mynameiscalypso · 07/12/2018 19:04

My previous psych diagnosed me with BPD based on very little evidence. My current psych doesn't think I meet the diagnostic criteria but I have a diagnosable eating disorder + ptsd/anxiety/depression.

bumblebee39 · 08/12/2018 20:09

I have kept my ED secret not told anybody in RL
I am diagnosed with EUPD, PTSD, depression and anxiety
But think it's really bipolar

OP posts:
reenchantmentofeverydaylife · 08/12/2018 22:27

8 years ago I was told by a psychiatrist, face to face, that I had dysthymic disorder (or dysthymia), which is a 'time-limited' form of depression but is dismissed by many as 'not as bad as clinical depression'. I couldn't understand it because I'd had severe depressive episodes on and off since I was a teenager (undiagnosed, largely) and knew there was something else at play, but couldn't figure it out for myself. At the time I was having psychotherapy on the NHS, which lasted a year. I then picked up again with a private psychotherapist whom I'd seen briefly before the NHS bumped me up the waiting list. I continued to see him weekly, sometimes twice weekly, for the next 7 years.

During that time I did a fair amount of counselling training. I showed some aptitude, passed all my courses, and did some reasonably successful placement work. But once my training had come to an end I began to struggle with certain interpersonal aspects in the workplace - my old problems rearing their ugly head again, basically, which a diagnosis of dysthymia doesn't even begin to account for. I struggled on for a while but gave it all up this July.

Earlier this year my psychotherapist moved away, which was a blow. That, and other factors, drove me back to community mental health services via my GP. At my screening with them I was told they had me down as suffering a variety of conditions: depression, generalised anxiety and PTSD. This was news to me! And I mean that in the sense that I didn't disagree with that for one moment, but they'd never told me they'd diagnosed me with those conditions. Following a second assessment soon afterwards, this time with a doctor, I was sent a care plan. The official diagnosis was Borderline Personality Disorder (Emotionally Unstable type). I had mixed feelings about that. On the one hand, I felt sad that my difficulties were viewed as fundamentally part of me, rather than a type of mental illness that one could conceivably heal from with time and decent treatment (like some forms of depression, for example). Just felt like a judgement on me, rightly or wrongly. On the other hand, it made such a lot of sense and I felt partly vindicated for my interpersonal struggles and handicaps. But the real shocker was to come.

Not long after that letter came I had to reapply for my ESA. I gathered together paper medical evidence going back to 2009, and while glancing over a psych report/care plan from 2010 I noticed it said Axis I: Dysthmic Disorder, Axis 2: Emotionally Unstable Personality traits!! I was shocked and saddened. It felt like if someone had verbally communciated that to me at the time, and described its implications, I'd have made some very different choices as a result, and would have understood my situaton better. Knowledge is power, after all, and yet for years I'd been showing traits of someone with EUPD but felt that I was just a difficult person who sometimes made others unhappy rather than someone who medically struggled with their feelings and relationships.

I've reflected on this a lot since the summer. I remember my private guy asking me a couple of times what the CMH diagnosis had been, and when I said "dysthymia, basically" he looked really puzzled. Now I know why. He knew his shit, but he didn't want to undermine the psychiatrist's authority, I suppose. Ironically, for a while I had a private client with a diagnosed personality disorder, and also a client at a voluntary agency I was in placement with whom we suspected had BPD. I discussed them with my therapist occasionally (because of the personal impact that work was having on me at times) and he must've known that it was a case of the blind leading the blind! In fact he even took a book off the shelf one day, opened it a page that had a pithy summative phrase for EUPD - "My misery is your command" - and was probably waiting for the spark of self-recognition to catch fire in me, lol.

dangermouseisace · 08/12/2018 23:31

I’ve think I’ve been misdiagnosed with EUPD but I don’t think I’ve got bipolar either.

I just don’t have EUPD...I don’t actually meet the criteria but apparently crap life+ suicidal depression must mean EUPD.

Why do you think you’re bipolar rather than EUPD?

Shepherdspieisminging · 08/12/2018 23:44

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reenchantmentofeverydaylife · 09/12/2018 00:28

OP, I'm sorry I didn't ask you about your situation in my post. I sometimes forget these threads aren't always about us posting our related experiences. (And I'm very mememe, typical EUPD lol)

I'm curious to know what it is for you that would make a bipolar diagnosis so significant. Getting more targeted meds and treatment? Feeling that a professional more accurately recognises the real dimensions of your struggle? Either way, it's important to get the right diagnosis, I learned that the hard way. As Shepherdspie said though, it could be a struggle to get them to reconsider the label they've already stuck on you, so it might be a good idea to go armed with a list of all the personalised reasons you feel you should have a bipolar diagnosis. Like dangermouse, I wonder if focusing on what has happened to you that's more bipolar than EUPD would help you make a case for them to rethink things.

Are you able to share here what you've been through that makes you feel deep down you've been misdiagnosed? I don't know much about bipolar theoretically, but having lived with a sufferer briefly I've seen up close how the manic episodes can play out, up and up and up and then crash. There were various destructive and aggressive behaviours involved, pretty dramatic stuff, and this person had absolutely no insight into her condition while she was in the grip of an episode. Not to put words in your mouth, but that's as much as I've ever seen of it close to, and that was over a period of a few months. I also had a friend for many years who was diagnosed bipolar eventually, but not until a diagnosis of schizophrenia had been dropped. His behaviour was fundamentally unempathic, very self-destructive (like throwing himself out of a first floor window during a delusion), and mixed with other stuff like paranoia, social anxiety and suicidal ideation. As far as I know, he's still alive, but his lack of boundaries hurt me too much in the end and I had to leave the friendship.

Shepherdspieisminging · 09/12/2018 08:07

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WhyDidIEatThat · 09/12/2018 09:18

Interesting thread. Diagnosed bipolar and intermittently obsessed with my undiagnosed borderline personality disorder, I don’t know if they’re just being polite or if I don’t quite meet the criteria but leaving it unacknowledged and untreated isn’t helpful.

bumblebee39 · 09/12/2018 09:19

I have periods of time where I barely sleep at all, barely eat at all, am always busy and sometimes overly euphoric. I am chaotic with money and used to go on binges/sprees of various kinds whereas now I stay up all night cleaning, writing, drawing etc.

Then I crash. I get so depressed I can hardly move let alone function. I seek treatment. It is viewed a success because my mood lifts, I then begin to lift too far again, I then crash again etc.

I was first diagnosed with bipolar as a teenager and then adult MH decided it was BPD because they never see me when I'm in an "up" phase. I simply don't ask for help when I am there because I prefer that version of me- she doesn't need anything and can get everything done and go above and beyond, she is seemingly limitless until the crash. It is the lows I can't deal with.
I believe I have hypo mania when I think I am well. I have been seen twice during a manic episode when I was younger (diagnosed by one person as ADHD and another as manic)
Anyway now because I have PTSD symptoms as well I think it's got lost and EUPD seems easier as it explains more and because they never see me up.

To clarify some of my "ups" as a teenager resulted in being arrested for breach of the peace etc. But since growing older I am able to manage these with sedative medications and self help so it is less chaotic (but still fairly chaotic just less so externally)

OP posts:
Shepherdspieisminging · 09/12/2018 15:42

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BippityBoppity87 · 09/12/2018 16:01

I've recently been diagnosed. It's taken over 10 years to get to this point. Before I just assumed I had seasonal affective disorder and my manic symptoms were just triggered from starting university, and I was just young and stupid.

Initially diagnosed with depression, anxiety and adjustment disorder before they saw me in my hypomanic stage after taking anti depressants without a mood stabiliser.

I didn't think I was hypomanic, just assumed I was happy and productive.

bumblebee39 · 09/12/2018 16:50

I have been put on

Antidepressant with antipsychotic
Antidepressant with benzodiazepine
Mood stabilisers
Antipsychotic with benzodiazepine

Plus additional sedatives and sleepers at times
Not found a combo that works but been put on lots of meds over the years, some of which seem more like bipolar meds than BPD/PTSD ones.

OP posts:
Shepherdspieisminging · 09/12/2018 17:37

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Shepherdspieisminging · 09/12/2018 17:37

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WhyDidIEatThat · 09/12/2018 17:40

What ‘bipolar meds’ are there though? We use antipsychotics (intended for psychosis or schizophrenia) or anticonvulsants or drugs for depression or benzos, but there’s nothing specifically for bipolar. Unless you count lithium but that’s not so much a drug as a serendipitous discovery.

Shepherdspieisminging · 09/12/2018 17:43

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WhyDidIEatThat · 09/12/2018 17:51

That ‘rapid tranq’ shot they give you for mania is usually a benzo I think?

Yeah also get that impression, nobody likes to be told how to do their job, but I know a little about the workings of my own mind. I get to observe it every day!

Shepherdspieisminging · 09/12/2018 17:52

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WhyDidIEatThat · 09/12/2018 17:58

I think it was probably lorazepam, I wasn’t at all happy about being in hospital and had no idea I was ‘ill’ so anyway, yeah benzos also used for bringing mood down.

WhyDidIEatThat · 09/12/2018 18:04

I’m just not convinced the distinction between bipolar and borderline is all that legit in some people, like maybe the op for example.

Vicious2018 · 09/12/2018 18:05

I have seen psychiatrists in four different country. I have had so many different diagnosis that I don't really anymore trust of them. I think they just try to control my symptoms.

BippityBoppity87 · 09/12/2018 18:21

It shouldn't have come as much of a surprise to be honest! @Shepherdspieisminging but I think I'm still a bit in denial about it.

I'm still on sertraline. My psych said if he was going by 'text book' I should be taken off it straight away, but because my depression was so bad in the summer, bordering on suicidal, he was reluctant to take me off it as he didn't want me to crash again, so just added aripiprazole to stop the hypomania.

I don't know if that's common or not, I suppose it depends on the individual case.

BippityBoppity87 · 09/12/2018 18:22

And zoplicone temporality to take as and when.

bumblebee39 · 09/12/2018 22:24

Diagnosed with BPD/EUPD, PTSD, anxiety and depression

Pretty sure I am bipolar though and that was my diagnosis with the child mental health team just not the adult one

OP posts:
dangermouseisace · 09/12/2018 22:25

OP I think some of a diagnosis comes from how you react to medication. Have you mentioned the hypomania to your psychiatrist? I think a bit is regarded as “normal” but obvs there is a limit to that.

The people I know with EUPD are on a variety of drugs...moodstabilizers and antipsychotics, moodstabilizers and benzos, antidepressants and antipsychotics, antidepressants and moodstabilizers, just antidepressants. So I think it’s more medication to treat the persons symptoms rather than a specific EUPD medication. There is no EUPD medication.

Diagnoses are just labels. Medications aren’t as targeted as their marketing would like to believe. They either sedate, or stimulate, and finding what works for an individual is trial and error regardless of diagnosis.

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