Misdiagnosis

I just attended a conference for ladies with Asperger's Syndrome (AS), where a psychologist spoke. Her presentation left me thinking about how I feel and interact with others along with my misdiagnosis.

The presentation started with an introduction on the female presentation of AS and common misdiagnoses: OCD and other anxiety disorders, ADHD, depression and Borderline Personality Disorder (BPD). She also discussed other clinician features, such as psychosis, seizures and mood regulation.

I heard an accurate description of my psychiatric and medical history that was mistaken for something else by psychiatry.

Initially, my symptoms were perplexing to the psychiatrists. I did not fit neatly into any diagnostic category, at all. Eventually, they sought out other explanations, like child abuse. This all started in a paediatric psychiatric unit, when I described my dislike for direct touch. Whenever, my skin is touched, I feel it throughout my body. The sensation is overwhelming so I pull away. All, I wanted was to know why. After that, the resident psychiatrist decided, I was sexually abused. For a time, I even believed it.

My medical history supported the sexual abuse theory. I had a few seizures and constant deja vu that suggested temporal lobe epilepsy. In my late teens, I was sent to a neurologist who refused to diagnose epilepsy, because I passed the EEG. After that, the psychiatrist reluctantly told me I was dissociating because of past abuse (she later apologized).

I also had a psychosis that lasted for two months, when I was 18. In my mid twenties, the psychosis returned and persisted for over a year. This further supported the misdiagnosis. Apparently, the first psychosis was due to PTSD rather than biological reasons.

Another issue was with medication and its side effects. While in hospital, staff noticed I was very sensitive to medications. They made me physically and mentally ill. My behaviour abruptly changed. Impulsivity, which was never an issue, suddenly was.

A lot of patients in the paediatric psychiatric unit were self harmers. I learned how to do this during my stay. It wasn't something I did a lot, but it was enough, along with my apparent sexual abuse, to warrant a diagnosis of BPD.

For nearly five years, I put up with this stigmatizing diagnosis and all the assumptions that come with it. Psychiatrists would assume everything I did was out of abandonment fears, which I could not identify with, at all. They were always surprised whenever, I told them, I never felt that way. I also challenged them, because I knew I was misdiagnosed. Most found me annoying because I refused to stop talking about my apparent diagnosis.

Eventually, I left psychiatry and decided to live.

The experience left an edible mark on my psyche. My diagnosis permitted hospital staff to be verbally abusive towards me and treat me as a lesser being. Most would not listen to me, because they thought I was trying to be manipulative. Huh?

I knew, one day, I would find the true answer to my lifelong problems. It took 18 years, but my belief allowed me to survive and fight, even during times of despondency and ambivalence.

My experience could have been prevented if a doctor investigated further, rather than looking for common and convenient answers. Autism came up many times but no professional wanted to bother with a thorough history and involve my family in my care. It was so much easier to diagnose an annoying and challenging patient who spoke of nothing but BPD with that disorder.

Yesterday's presentation validated my experiences and convictions. Now, I just need to use it to heal.

Unfortunately a common story. I went with near catatonic depression for 3 years and doc refused to treat it since I was "BPD" and I did it for attention. For attention??? She claimed I should forgot about being depressed, if she talked about it it would feed into the BPD and I would end up sicker.

So no treatment. 1095 days of utter hell. I finally got her to treat me and things got a lot better.

When I was BPD I was treated like garbage. After my rediagnosis to Asperger's my doc was suddenly nice to me! Well screw her. I'm glad she quit. I was so full of hatred against her.

Half of my issues are caused my mental care. No one ever said sorry.

I hope they get theirs one day.

The psychologist who gave the presentation also stated it is very common for ladies with Asperger's Syndrome to get diagnosed with BPD. She trained and worked with Tony Attwood so she knows what she is talking about, unlike a general psychiatrist, who has limited knowledge of Asperger's Syndrome.

It really hurts, when apparent professionals tell you, "You are just seeking attention." Grrrrrr.

Are you getting help now?

BPD has become a poor excuse for doctors who won't take the time to do a thorough assessment. It is not us.

Most cases of misdiagnosis have very serious consequences. My apparent mental illness was psychiatry induced. It felt like I was being shaped into the BPD diagnosis. They wanted me to have that disorder so bad. Now, I am traumatized.

Only one psychiatrist apologized. Why? She admitted nothing about me and my history made sense. She suspected, I had a seizure disorder and Asperger's Syndrome, when I met her in the mid 1990s, not PTSD.

I don't expect anyone else to apologize, ever.

They will.

We must fight back by telling our stories.

How can I ever forget this?

Psychiatrist: How many times have you been in hospital?

Me: No response.

Psychiatrist: 1, 5, 10, 20, 30? Tell me? (He's tone of voice was sarcastic.)

Me: No response.

After that, I refused to answer anymore questions. As time went by, the doctor's frustrations became more and more pronounced.

I did not deserve this.

Last year, I told this story to the psychiatrist who assessed me for AS. Her response, "That was very unprofessional."

Well, I have some services for people on the autistic spectrum. I take meds for depression and anxiety and I really don't bother seeing the prescribing doc, I have absolutely nothing to talk to them about. I also have a nurse for ADD, but I only see her once a year, she is nice though.

So yea, things are OK today, but every time I get reminded of how bad they treated me in the past and how they forced me with threats doing this and that therapy or this and that medication, I get mad and traumatized. It is a long time ago, but I don't know what to do with those feelings else than ignore them. The only thing helping would be if they apologized and actually openly stated they were wrong and harming me for several years and made me lose my whole youth.

Like that ever is going to happen.

So I ignore it mostly.

jimi... I hope my thread did not upset you too much. It wasn't my intention.

-----

More thinking...

Occam's razor states the simplest answer is often correct. This line of reasoning is usually applied to the sciences. It wonder if it should be used in the diagnosis of psychiatric conditions.

I have noticed (on PC), people have a multitude of diagnoses. I often wonder if one or two conditions can describe what is going on more accurately.

Before my AS diagnosis, I was labelled with Dysthymia, Cyclothymia, PTSD (fabricated), Dissociation (due to the seizures), Depression, Anxiety Disorder, Psychotic Disorder NOS and of course BPD. AS describes my "symptoms" well. I have the developmental history, sensory issues, obsessions, and so on to back it up.

Note: AS can be broken down into a multitude of psychiatric disorders.

Perhaps this way of reasoning might help prevent misdiagnosis and/or inappropriate treatment.

At most I "had" 4 personality disorders at the same time, narcissistic, schizoid, paranoid and one more forgot which one. All those (for me) were better explained with Asperger's. (Also it's a little funny I was supposed to be both needing people's attention, NPD, and being unaffected by it, the schizoid.)

For me my AS and ADD is one thing, it's just about where to draw the line. If you really draw a strong line I cannot identify with those with AS and not with those with ADD. In a way I don't see myself as having both, I see myself as being where they overlap. I don't for example think I have the symptoms that can happen in both, twice.

I almost know for a fact my sleep disorder is part of the neuropsych things, because those are more prone to this kind that I have.

Also my anxiety types are absolutely real, many people on the spectrum have anxiety because they are sensitive but it has not grown into specific disorders. It has with me so I do see a point in diagnosing them separately. I don't think they just happen to anybody though, I think they are rooted in my type of thinking (low latent inhibition).

I even think my somatic illness is somehow genetically related.

The diagnoses I have gone through over the years:

OCD (correct)
BPD (incorrect)
suspicion of schizophrenia (incorrect)
suspicion of Asperger's (correct but discarded)
schizoid PD (incorrect)
narcissistic PD (incorrect)
paranoid PD (incorrect)
some other PD (incorrect)
bipolar (probably incorrect)
PD NOS
depression (took me three years of severe depression to get the diagnosis! before it was seen as part of PD and "false". i was diagnosed depressed as inpatient but quickly undx'ed by my main doc) (correct but since then I'm much better in that aspect)
ADHD subtype ADD (correct)
depression with anxiety (I'm not sure how I relate to this)
DSPS (was promised to have this entered separately into my chart but doc forgot...) (correct)

Other things I have that are not diagnosed are panic disorder because even when it hits it hits really hard, I have loooong stretches when I'm not affected, GID (since I never mentioned it to a doc, subtype can be more common in AS, still quite unknown) and prosopagnosia (probably a direct result of Asperger's). Also before my depression I had a long stretch of dysthymia but it was not diagnosed.

So my real chart these days reads as follows:

Asperger's with ADD
Depression with anxiety or suspicion of bipolar
OCD

I'm OK with this "list" although I wish my doc had added the DSPS as separate even though I know where it comes from because it is quite severe.

Your list highly suggests the professionals were very confused.

It is very troubling to read of people being diagnosed with multiple Axis II disorders. I thought one could only have one personality disorder diagnosis. After all, we have one personality.

I forgot to add PD NOS to my list. Schizophrenia was mentioned, but I somehow escaped that diagnosis.

A sleep specialist officially diagnosed me with Non-24 hour circadian rhythm disorder. My internal clock is about 26 hours. I have tried everything to regulate it, but I can't. In my late adolescence, the psychiatrists told me I needed a regular schedule to fix it. Unfortunately, it did not work. Apparently, I wasn't trying hard enough. Grrrrr.

The psychologist mentioned mood/emotion regulation is a common problem for people with AS.

Last fall, I met the criteria for OCD, but my psychiatrist refused to diagnose it, separately. She felt the label was redundant, because my "cognitive style" was (and is) a more accurate description of what was going on. I concur with this kind of reasoning.

What is DSPS?

Didgee,

You don't mention how old you are but I know that for a lot of people (let's say 30 YO and older) have very similar stories because Asperger's was not a diagnostic choice when they were children/teens. Even now, it's not easy to find providers who are skilled at diagnosing Asperger's in adults. Hell, I've even come across some who think that it's impossible to diagnose an adult with Asperger's unless that person is able to bring in a parent or other person who can confirm the person's experiences and disposition as a child.

Actually I do have something between delayed sleep phase syndrome and non 24. They are very much related. DSPS is when your sleep cycle is very much delayed, often by 5 hours or more. It means you can fall asleep, but when your body lets you. Getting up at 7 am feels like getting up at 1 am. Yep, chase kids outa bed at 1 am to go to school day after day....

DSPS can be stable or with progression, meaning your body still prefers the late hours but you even have a hard time keeping a schedule even if you are left to sleep whenever you want. As humans usually have a longer than 24 hour inside day, the person is tricked by his own head to go to bed later and later every day.

When there is no tendency to prefer late nights/early mornings for falling asleep, but left to yourself, you go to bed later and later (in rare cases earlier and earlier), you have non 24.

The way it has been explained to me is that the inner clock is very inaccurate, and it is with most people. I think with most people it is 25 hours or something like that. So we need a reset system, just like in the old days when you had a watch it was rarely as exact as digital watches so you had to reset it every day if you wanted it accurate. (For some reason LOL I remember my dad's watch, it used to only change 3 minutes per day but after an accidental run in the washer it changed 10 minutes per day. )

Anyway, for this reset we have a part of a protein which reacts to different cues in the environment. Even very basic life forms have this. In people with circadian rhythm disorders this is probably less prominent or maybe even totally missing. Which means you cannot, how hard you ever try, get a natural sleep pattern. You can have an artificial one, but it will never fully "take".

There are probably people with this deficiency who suffer less because their inner day happens to be around 24 hours, but the way I hear it, it can even change from day to day... And also I understand you can sort of run out... like produce it when you are younger and then it goes down.

Well, you probably know all these things, but maybe someone else is interested as well, who knows..? DSPS is often mistaken for insomnia so I think it is underdiagnosed.

I bet since you are a non 24 you can well relate to the DSPS and understand how absolutely frustrating and even disabling this can be.

I work on my sleep EVERY DAY. I don't think many people can understand this kind of effort. If I lose control and do a baddie like take a nap, everything is messed up and I have to start over again. Sometimes I want to slap the heck outa this disorder.

But yea, then people say, just go to bed earlier. Yea right. When I was one year old, my mom could not make me fall asleep until 10 pm! Even if I did not nap...

Sadly, it was not. I know it wasn't aimed at me, but sometimes a little common sense could maybe override the thinking that made up psychiatry back then.

Like, when I said my anxiety prevented me from going to see my friends and that saddened me, the only answer (didn't matter what doctor or therapist), the answer was that I lacked insight, and my anxiety was proof of that. They claimed I had created my anxiety issues so I would not have to see my friends. Why? Because deep down I hated them... Yea they told me I hated my best friends and my anxiety proved it.

This was not a lone occurrence, everything I said was twisted like this. I tried to say it does not make sense. Why would not a single one just wake up and think... hey waitamin, maybe Jimi is not totally out of it, maybe Jimi has a correct analysis of their situation? But no... Never.

First do no harm. Like yea right. Get worse by getting treated. Nice job.

I do understand their thinking and I was myself a psychology student at the time. So I get it.

What is so pathetic in my case is that everything that was a popular idea was projected on me. First the psychobabble stuff. Then the BPD (it still had some new and cool aspects to it). Then for a short while bipolar was really popular and then I "had" that. I actually suspect I was suspected Asperger's (second round when it was dealt with), because it was popular. Then ADHD became popular here. Then I had that. (In what order illnesses and conditions got a lot of attention can vary between countries) So in some way (EEP), maybe I got the right diagoses finally by chance???

I am 35.

I asked my mother, if the AS would have been detected earlier, if I was born in the late 80s or early 90s. She told me yes. In the late 70s/early 80s, my delays and odd behaviours were blamed on me being stubborn.

What makes me so mad, is autism came up in all my psychiatric assessments, even in the mid 1990s. They suspected I had some form of it. If they investigated their suspicions, I most likely wouldn't have gone through all the hell associated with stigma of BPD.

It really hurt. Suddenly, all my feelings were no longer considered genuine. Apparently, I was trying to manipulate the doctors. As a result, I began to feel horrible about myself, even though I knew the diagnosis was wrong. Eventually, I became indignant and made it known.

Doctors, social workers and psychiatric nurses who got to know me back then, told me I was misdiagnosed. Unfortunately, none of them challenged the opinion of the staff psychiatrist who made the diagnosis.

Yes, I can relate. Circadian rhythm disorders are definitely disabling.

My sleep cycle moves around the clock in about 6 weeks. If I don't fight it, the cycle is about two weeks shorter. This makes life very difficult, because the majority of the world operates during the day.

Classes and appointments are scheduled around my sleep patterns. Making late afternoon and evening commitments are easier on me, since it usually permits me to sleep at least 6 hours. I need at least 9 hours of sleep, but I will sacrifice this when I need to.

If I don't work around it, I end up attending commitments on minimal sleep. A few times last semester, I went to class on 90 minutes of snooze. This makes it very difficult to concentrate. A fog invades me head and remains in it, until I go to bed.

Sometimes, when I'm up all night, I will go to shopping. There is a huge 24 hour grocery store nearby. Shopping late at night is great, because the store is quiet and I don't have to wait in line.

I believe this is evident in early life. I never ever slept well, even in early childhood. Usually, it took me hours to fall asleep. By the time, I was 10, sleep did not come until 1 or 2 am.

Do you know the name of the protein that reacts with different cues in the environment?

It's weird you also had a suspicion of autism that was not dealt with. I learned about mine by reading my chart, and before it was put there I had been diagnosed as PD for five years, and after I was still diagnosed PD for i think six years. Then I realized I had Asperger's for real and my doc also realized.

It really hurts being pointed out as someone no one can trust, or someone who doesn't feel what they say they feel. It's so weird how it can mess someone up EVEN in the cases the patient know they are right. And I actually wonder if their way really works with those who really have BPD. I mean sure, you have to set boundaries but being mean and callous how does that help? Meh...

Somewhere late 2000s there was some kind of breakthrough about sleep and bodyclocks, and I know I printed out part of a study about this, to prove to a psychologist that this is real and not just bad habit. I didn't keep any copies for myself of course. So since I can't find anything about it, I wonder if it wasn't the big thing it was made out to be.... if it was wrong or just was forgotten? Anyway, it was probably an enzyme part the synthesis of melatonin. Maybe?

I am so glad you finally have an answer, good on you for knowing yourself better than a bunch of strangers with a survey. I am sure they are intelligent but how can they be 100% sure and put us on mood altering drugs just from a few answers on a sheet. What a shame there isnt blood tests then it would be accurate. I am supposed to be Bipolar but am not convinced, I show a couple of signs but not many and no different to the majority of stressed out people living in our society.

I often wonder about BPD and the people who have it.

My psychiatrist mentioned BPD is a misused and overused diagnosis. I think this approach is a generalization, because it doesn't form a representative sample of the disorder, since all "difficult" and "defiant" clients with and without a PD are grouped together.

If BPD clients are respected and heard, their prognosis might actually improve. If one repeatedly uses the Emergency Department, professionals should address the issue with respect, rather than belittling them with inane comments, such as "frequent flyer." People with BPD are people like the rest of us. They have feelings and deserve to be treated with respect.

Unfortunately, it is so much easier for professionals to deny appropriate care to a difficult patient, than to take the time to listen and make a difference. Often, being heard is all it takes. It is vital for the formation of a therapeutic alliance and progress. How is someone supposed to improve if they are not being heard and respected?

The psychiatrist who apologized told me, "All you wanted was to be heard." She was absolutely correct.

After I was diagnosed with AS, I have been much more willing to discuss my problems. Why? I know, I will be heard and not assumed. As a result, I have noticed for the first time ever, progress in therapy and changes in me. My family has even noticed.

No one knows themselves better than themselves.

If the diagnosis doesn't fit, most likely it is wrong. It is too bad, some doctors won't listen to lay people, who actually have a lot to contribute to their understanding.

I knew, I was misdiagnosed. It permitted me to survive the entire ordeal. One day, I knew I would find the answers, and I hope you will too.

I've met several people with BPD who were not hard to deal with at all. Some are even so malleable it becomes a problem. Then some I've met have been quite vile. I really have a hard time imagining they have the same thing. But according to the manual, there might just be one symptom overlap between two people with BPD and that in itself is strange. It's like then where is the essence of the syndrome?

BPD must have different presentations, but with similarities. I see this in people with AS, even though they have different personalities, backgrounds. The same type of reasoning has to apply to BPD.

In the past the DSM focused on criteria not backed by research. The 5 out of 9 was arbitrary.

Now, the DSM-V focuses more on core traits:

A. Personality functioning: 1. Impairments in self-functioning: identity and self-direction and 2. Impairments in interpersonal functioning: empathy and intimacy; and

B. Pathological personality traits: 1. Negative affectivity: emotional liability, anxiousness, separation insecurity and depressivity and 2. Disinhibition: impulsivity and risk taking; and finally 3. Antagonism: hostility.

In the past, one could get the diagnosis without having all the core traits.

DSM IV and V personality disorders comparison: http://www.dsm5.org/Documents/Person...s%205-1-12.pdf

Ah yea... that actually sounds much better. A lot of people complain about the new manual, and in certain areas it is so much better.