Poll Have You Also Been Diagnosed With Did Or Dd-nos

[Dissociated1]

I'm thinking I was given the same test as a participant in a study by The Center for Brain and Cognition (CBC) at the University of California. It is called the "Dissociative Experiences Scale" (DES) and is the accepted gold standard for dissociative behavior.

I can certainly understand your frustration on being diagnosed based on the results of a single test. My results actually had the opposite affect for me. It was extremely validating that my doctors were able to see with the best indicator they have (however flawed) that I wasn't crazy or turning into a woman; I have two very distinct and highly developed personalities who share my body. I've taken the test several times over the past year and consistently score 50-60 range.

 

[maddog]

I'd actually forgotten about this thread, or that I'd responded to it several months ago. I feel a little regretful and wistful to reflect now on what I wrote...

I have now been diagnosed with DDNOS by the same doctor I spoke so disparagingly of above. Do I agree that I have it? No, I don't, and that conclusion was arrived at following a lot (arguably too much) soul searching, researching, self analysing and honest discussion with my T, who knows me and my condition(s) better than anyone else. Sadly, the label has been slapped onto my back, and has caused me some dramas, for which I carry some considerable bitterness.

Yes SOL, I have filled out the DES and agree with your comment about the awkwardness and impractical nature of the 10%-increment scale. Not only does it pose the problems you describe, but it is also open to considerable inconsistency over time if completed multiple times, as the difference between choosing 40% on something one week and 50% the following week is really just a difference of momentary judgment, and add up those incremental changes across the whole 28? point (sorry, I can't quite remember and don't have it in front of me) scale, and it can actually significantly change your score.

While the questions offer a good insight into some of the key markers of DID (and I mean *some* not all, and not in all cases), I do believe the results can be grossly misleading, particularly for those who may have a dissociative disorder other than DID, or just some dissociative symptoms which don't meet diagnostic criteria for a separate dissociative disorder.

I scored 9 on the DES by the way. And yes, I have DDNOS, apparently...

MD

 

[Abstract]

nd has caused me some dramas,

If you ever feel inclined MD would you like to share? Sorry this is the case for you. Diagnoses should help us get appropriate treatment and getting incorrect ones is not helpful for many reasons.

I agree about the test. I am sure they accurately diagnose people and use it as part of the means to get that diagnoses (with many other means one hopes) but I also imagine it could lead to false positives. Or even false negatives for that matter.

The other concern is that certain questions don't help identify the cause of the symptom. For example memory loss. That can be from depersonalisation type dissociation or it can be because someone has an alter. The questions don't help to differentiate the one from the other. There is a huge difference between depersonalisation disorder and DID.

has been really helpful.

I can truly understand that SC. I am glad you have proper answers!

 

[Britt.f7]

I put no, even though I've had episodes where, when talking to people, I don't always remember what was said afterwards. It is usually when it is someone new, or that I don't know very well, or put on the spot, or in groups. I hate it.

 

[safenow]

I was diagnosed back in the 1970's and they called it Multiple Personality Disorder (MPD). At that time I had 24 distinct personalities.

They gave me more than one test, and over the years I've only had a couple of doctor's who knew how to work with us (me). I had one who wanted to do an exorcism. I also have chronic Post Traumatic Disorder (PTSD) from multiple traumas, starting at age 2 with torture.

I won't try to explain, but if you have any questions, I'd be happy to answer them for you.

 

[safenow]

"Dissociative Experiences Scale" (DES)

I just took your test, and it said I scored a 65. Those questions are written by someone who needs to really work with many people with real MPD. Some feel they believe... etc. etc. etc. I answered in the middle range, because it's not "always" or "never". It depends upon how high my stress level is as to what happens and which alter or alters are out.

And from what I've seen, A person with DID may not have MPD, and a person with PTSD may not have dissociation. and a person with dissociation may not have DID.

 

[Abstract]

I think from what I understand: DID is another term for multiple personality disorder/MPD (which relates to having alters) but "dissociation" does not mean someone has DID/MPD (alters). Because they are two totally different types of dissociation and really the test includes both together. Which is a shame I think as it can confuse the issue.

 

[Maggiemay]

I know this is old now, but very relevant to me at the no. I'm in the process of getting DD diagnosis, most likely depersonalisation disorder. I've taken the DES questionnaire yesterday - I scored 55%...

 

[Deleted member 8714]

I self-diagnosed myself in 1988 during an ACDF meeting. A woman shared and I recognized myself in her story. I got formally diagnosed a year later. Back then it was called MPD. Prior to that I was diagnosed with extreme PTSD. The therapist told me I had the worst PTSD she'd ever seen in all the years she had practiced. I had severe flooding of memories.

 

[aphr0ditus]

At age 14 I self-diagnosed myself with PTSD after my sexual assault and after being admitted to a psych center (inpatient), I was diagnosed with C-PTSD at age 15. Then, at age 16 was diagnosed with DDNOS (with C-PTSD). My official diagnosis now (at age 17) is C-PTSD with Depersonalization Disorder. It's upsetting how stigmatized folks with Dissociative disorders are inside and out of the mental health/medical field.

 

[whiteraven]

I was dx with DID in 1998. Interesting that nobody really noticed the c-PTSD symptoms at all. As I look back, I realize I've had them for years; I finally pointed them out to my current therapist early last year (after I'd been seeing him for 4 years) and he said, "well yes, you do seem to be exhibiting all the signs." Brother.

 

[Nathanael]

@whiteraven
We were diagnosed only a few years apart so I would like to ask you how you've been diagnosed, what did they do to prove the diagnosis?
I keep reading about the scale that seems to be used by now and I can't remember that they were used back then, but it might be due to me being in a different country than most people on here and not because it just wasn't a diagnostic tool.

They used video and audio evidence as well as eyewitness reports from the medical stuff, I think at least three, and all of this together was the common way of diagnosing DID in my country. I'm not sure what they do now but I'm fairly curious about how it was handled elsewhere.