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Unread 04-29-2013, 04:49 PM   #1
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Angry 12 years with the wrong diagnosis. So angry

I am mad right now, the more I think about it the more angry I get.

For the last 12 years I've had therapists and psych docs convince me that I've got DID. For 12 years they tried to convince me that I had multiple personalities. Never once did they think "Well hmmm... Let's try and get some brain scans done first to rule out anything else" but it was always "You have DID"

Then I had my drop seizure in May. My therapist and psych doc convinced me they were psuedo seizures and I would never have another again. Said it's somewhat common for those with DID to experience psuedo seizures and I had nothing to worry about. And each session was spent him trying to pull any alters out. To get me to let them out as he called it. Convinced it was DID he started trying a form of hypnotherapy to get them out which only put me in a foggy out of it state. Then he starts to say "If your alters don't come out soon it's going to be hard to convince the pdoc it's not schizophrenia" and he kept on saying "You don't want schizophrenia but if I don't meet any parts I may have to tell her I think it's schizophrenia." And he's not the first person I've heard this from. And not the first person to diagnose me schizophrenic.

They all do, and they all claim DID. But I learned 3 weeks ago it's epilepsy and the 12 years spent in therapy with the wrong diagnosis made the epilepsy worse going so long untreated.

I've spent the last good chunk of my life thinking I was mentally ill in every way shape or form. But it was a medical condition and I'm angry that the 30-40 different psych docs I've met with throughout haven't noticed no meds worked and only made me worse and it wasn't DID but was epilepsy. A couple throughout said they thought it could be epilepsy but my t's at the time were saying "No way" and since I talked to them the most I figured they knew.

I had a t even med me up to try and make me dissociate. I was on high meds to open the door to dissociation and it made things bad. But she was determined to prove it was DID.

Do they get a prize or something for working with a DID patient? It seemed like everyone wanted it to be DID. I just wanted to know what it was.


Sorry if this is in the wrong section, it can be moved. I don't know which area to put it in

Sorry for the vent but ugh...
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Unread 04-29-2013, 05:27 PM   #2
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Default Re: 12 years with the wrong diagnosis. So angry

I really hate this happened to you.
I'm sure it was very stressful. What may
help you have closure is filing a formal
complaint against the docs. I was also
misdiagnosed and I felt better after speaking
up. Contact your local dept of mental health
and the license board.
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Unread 04-29-2013, 06:44 PM   #3
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Default Re: 12 years with the wrong diagnosis. So angry

Wow, just wow, and so sorry to read about such a misdiagnosis. Are you currently under the care of a neurologist? When you had your first, pseudo seizure, your doctor didn't send you to a neurologist to rule out any physical issues, first and foremost.
Yes, angry, doesn't even describe, how I'd feel in your shoes!!!


{Edit to Add: Back in 2007, I had some strange, exhaustion issues, to just put this out there. I went to my GP. He noted on my chart, either psychomotor seizures or brain lesions. And immediately, his office set me up with a neurological appointment. Which led to my Multiple Sclerosis Diagnosis. Neuro, first, then Psych, because various neurological disorders, can and do, present as a psyche issue, when really, sometimes being ill, with a neurological illness, can present as something psychological. I cannot believe, my eyes, your story, yes, just, I am angry WITH/FOR you, right now}
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Last edited by healingme4me; 04-29-2013 at 06:50 PM. Reason: Addendum
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Unread 04-29-2013, 07:32 PM   #4
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Default Re: 12 years with the wrong diagnosis. So angry

(((purpleflyingmonkeys)),

I am so sorry you went through all this mess, I have to say, I am not surprised I had something similar happen to me. I had attacks, painful attacks every month and my PMS was very hard on me too. I kept going to the gyno that kept telling me nothing could be done for me and that I was just dealing with cysts that were forming and breaking.

I suffered for so many years until I had an attack that would not end, excruciating, that is when a different gyno finally went in orthoscopically and saw I had the endometrosis and lazered it out.

I am sorry, I cant blame you for being "livid"about this. I do think you should file complaints if you can, just to put them on notice and release your anger.

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Unread 04-29-2013, 09:08 PM   #5
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Default Re: 12 years with the wrong diagnosis. So angry

I'm so, so sorry that you were misdiagnosed and had to go through so much because of it! I've been misdiagnosed myself. In my case I was told that my gallbladder attacks were psychosomatic, when in reality they were medical in origin. I finally was properly diagnosed and had surgery for it.
I've had pseudo seizures and I am an epileptic and am not DID. So, I know that you don't have to be DID to have them and you can be epileptic and have them.
I hope my post has helped you in some way.
PM me if you I can help with any concerns you may have about being diagnosed with epilepsy. I will help in anyway I can.
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Unread 04-29-2013, 10:35 PM   #6
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Default Re: 12 years with the wrong diagnosis. So angry

I'd be mad, too. I think docs like telling that they are treating a patient with DID. I'm glad the epilepsy was finally detected. Once a diagnosis is made, alas, some doctors just want to hang onto it.
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Unread 04-30-2013, 05:19 AM   #7
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Default Re: 12 years with the wrong diagnosis. So angry

I can relate to your story.

My experience is very similar to yours. It took me 18 years to get a proper diagnosis so I have a good idea what you are feeling, right now. I too was diagnosed with bogus psychiatric disorders. It left me traumatized. What profoundly hurt was the shaping so I could fit those diagnoses.

When a doctor gets an idea in their mind what a patient has, it can be very difficult for them to consider other conditions. This is especially true, when a consulting physician requests medical records. They tend to prevent them from coming up with impartial opinions.

All this harm could have been prevented if a doctor was willing to take the time to ask questions and consider other possible conditions. My present diagnosis came up on numerous occasions but it was much more easier to fabricate a childhood filled with abuse and build from there.

Psychiatrists thought I was a perplexing patient. My family did not believe I had all those disorders, especially since all my symptoms started immediately after I was put on medication and stopped after I discontinued them.

My initial reaction was anger and relief. Later on, doubt surfaced. At times, I experienced a multitude of emotions. It is a grieving process. Now, I am healing and in therapy for my misdiagnosis.

The correct diagnosis has changed my life. It will also change yours. You have every right to feel livid. Feel it and work through it. It gets better. Trust me.

Last edited by The_little_didgee; 04-30-2013 at 06:58 AM. Reason: Grammar
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Unread 04-30-2013, 07:41 AM   #8
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Default Re: 12 years with the wrong diagnosis. So angry

so that was the diagnosis-epilepsy? no DID? Good for you for checking it out on your own, that takes a lot of guts when the system sometimes is very difficult to deal with.
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Unread 04-30-2013, 10:07 AM   #9
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Default Re: 12 years with the wrong diagnosis. So angry

Thank you all for your replies!

The diagnosis is in fact epilepsy and not DID, I'm assuming DID gets ruled out in this case but I don't know. Many of the blackouts thought to have been DID are now being suggested as seizures.

There is no doubt still that I black out during high abuse times, but if I turn into another personality or just black it out is the question. Something always felt off about the DID diagnosis, 12 years and I was never fully able to accept it as my diagnosis. It just didnt feel right.

I would file a complaint I just dont know where to start. My last t is the only one in my state that I have seen, he's the one who kept saying I would never have a seizure again, they were psuedo seizures and if a part didn't come forward he would be forced to have me diagnosed as schizophrenia. I know I need more therapy now though.

I have bad anxiety and this new diagnosis is making things difficult. After my drop seizure in May I went to therapy strictly because of the anxiety of it. They assured me I would no longer have seizures and that my biggest concern was DID. So months were spent trying to break into the DID and work on the DID, when I would bring up my anxiety and things about my past abuse that got resurfaced he would sit there and say "We don't have time to talk about the weather, we need to get your parts to come out and get the ball rolling" it was a complete waste. I could tell if I did have parts that they weren't coming out around him at least. He'd even mentioned how it would be convenient if something triggered me into dissociating. I stopped going to him because of all of this.

But at the clinic I was seen at, when I first started there they said they didn't like to change your therapist. If you had a problem with them to talk to them about it and work it out. So I just stopped therapy all together. I got some good advice from him on occassion but some of the things he said made me think twice about him. Like when he got a phone call from the front desk. One of his patients was there and he says on the phone "What the he!!, it's not like there is anything I can do for him!" then he gets off the phone with me and is all frustrated and says the patient is a parapalegic from an accident a year ago and that there was nothing he could do to make the patient better mentally. He'd also discuss other patients and their diagnosis (he wouldn't give names but gave great descriptions of the patients to where I'd recognized his favorite person to talk about) and personal things about them.

That clinic though is the only one I can afford so I can't very well go back to therapy right now, I wont go back into his room and I can't change therapists so I'm stuck without therapy. I've been doing alright on my own though.

All this time and energy spent on the wrong diagnosis which ended up making things worse. Around 20 years of undiagnosed epilepsy (if I got it from the accident which is what they are guessing since my blackouts started a couple weeks later and I did hit my head during the accident) and the last 12 years with the wrong diagnosis. I've been in and out of doctors and psychs with the same symptoms and was going crazy because they would always pick and choose which symptoms they wanted to focus on and leave the rest out. When it turns out epilepsy covers the majority of my symptoms and even some I didn't realize were symptoms. Like my visual distortions. Psych docs said they were hallucinations but they weren't and I knew they weren't. I just thought they were a trick of the eyes or something. But often I see things breathing, I see lines get longer, I see patterns crawl, I don't see things that aren't real, I just see minor movement in things that are there, yet the psych docs said I was having hallucinations. But they are "visual distortions" that are directly related to seizures in my case.

You would have thought someone would have sent me to get some kind of brain scans before putting me on handfuls of medication at 15 years old, but I guess it makes their job more interesting and gives them brownie points or something if they have some rare off the wall disorder.

One good thing that came from it, I've met many kind wonderful DID patients (some who the doctors don't believe they have DID because they don't believe DID exists) and can really sympathize with them and understand the disorder so much more than I ever would have. It's crazy how so many doctors don't even believe DID is real yet with me they all were convinced I had it and it could be nothing else.
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Unread 04-30-2013, 10:22 AM   #10
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Default Re: 12 years with the wrong diagnosis. So angry

I am in somewhat the same boat. I was diagnosed with MS over 25 years ago. I have had exacerbations which were treated traditionally as MS. I took MS medication for years. Then, after all this time the doctor decided I do not have MS because I am not getting worse. He cannot say what I have nor can he explain why I feel the way I do and why I react so well to the medication. So, I am in limbo again. I still say I have MS but I am not taking medication. I can't take steroids any more so it doesn't matter if I have a bad spell or not. There is nothing that can be done for it.

I am angry and frustrated. I don't go to doctors anymore and I don't talk about it with my PCP. I feel so alone dealing with this issue and my inability to do normal things. I wish the doctors could experience how I feel. I don't think they would be so quick to dismiss my symptoms then.
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