[PurpleFlyingMonkeys]

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...

[Cocosurviving]

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.

[healingme4me]

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}

[Open Eyes]

(((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.

((Hugs))
Open Eyes

[michele#3]

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.

[Travelinglady]

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.

[The_little_didgee]

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.

[avlady]

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.

[PurpleFlyingMonkeys]

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.

[jadzea]

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.

[H3rmit]

What happened to you bothers me so much I keep coming back to this thread but I can't respond other than to give you a sympathetic hug. The injustices done by herds of unthinking "professionals." I'll stop there, as my body is responding badly to this.

[spondiferous]

I'm sorry this happened to you. After 3 1/2 years of working with one diagnosis mine has been changed, and that's been bad enough. I can only imagine 12.

[PurpleFlyingMonkeys]

Thank you all for everything.

The thing that gets to me right now is I have no clue what is mental and what is physical. I have no clue what is going on any more. I have an appointment with my neurologist Monday and hopefully he will be able to answer those questions for me

[radio_flyer]

I am so sorry this happened to you. Seems to me there was an "era" when T's were overzealous with DID. In general, as with my experiences in therapy, I feel the Ts tend to "go by the book", rather than look at each person as an individual with clusters of symptoms to try understanding what their client is experiencing.

A person was abused as a child, they dissociate, they forget important things, or even forget most of their childhood, gosh, then then must be "DID". I had a T tell me that I would never get better unless I accepted I was DID. I really liked her too. She was educated and trained in dissociating and DID. She knew what she was doing. Just in my opinion, not every thing that walks like a duck, is a duck.
Heck, a chicken could be too fat and waddle like a duck.

ANYway, she tells me to prove it, go home and put out some paper and pens and ask those people inside to come on out... SOOOOOO I do that.. But I added, hey if any one in there likes to cook, come on out and sign your name. Or someone that can clean house and laundry, please sign your name... ANd by the way, would be nice if there would be a super smart person that can earn some "big dollars" because this working for nickels and dimes is the pits... And while all you kind folks are doing your thing, I can be doing mine too... shrugs shoulders... T was upset with me an said that isn't how you do it.... Bottom line, I knew something was wrong with me big time, but I was not buying the DID thing.. I ran from therapy and never looked back.. (just adding, not one person signed that paper) so I was right and the T was wrong...

I only mentioned this because it does and has happened to others. I don't know why and I feel bad that you spent l2 years working on a wrong diagnosis.. The good thing is, you now have a correct diagnosis and you can now get proper treatment for healing and your wellbeing.....Good luck... and sending positive vibes.

[shezbut]

Originally Posted by jadzea

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 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.

(((jadzea)))

I'm not a doctor ~ BUT... I did care for several people with advanced stages of MS as a CNA at a nursing home, for 3 years. I quickly learned that there are different types and phases of MS. In the early stages of the disease, it is not uncommon for symptoms to come and go. In fact, people usually aren't diagnosed with MS until at least their second phase of the symptoms strike.

Multiple sclerosis - MayoClinic.com

Multiple Sclerosis Support : MS Treatment : MS LifeLines®

I hope that this helps you feel a little better. Gentle hugs to you!

[shezbut]

Originally Posted by PurpleFlyingMonkeys

The thing that gets to me right now is I have no clue what is mental and what is physical...

(((PFM)))

I sure can relate to what you're going through! It is maddening, because the symptoms feel very similar. My epileptologist has diagnosed me with E and psychological seizures. As a result, I have been diagnosed with DID-NOS by my pDoc.

If other people are around, and can describe what happened to the doctor, then it goes to the epi Dr. If it's just me (alone), then it goes to the psychiatric doctor. A lot of the time I am alone, so I can't get verification in most cases. It is incredibly frustrating for me!

My epi Dr. has told me that it is not uncommon for those with E to also have non-epileptic (psychological) seizures. Trust me, that "fact" does not comfort me at all. It's very difficult to know what's psychological and what's physiological. Gets me all frustrated again just mentioning it now!

Best wishes!

[possum220]

What a royal disaster. Some-one should be made accountable for so many people to get it wrong. I am so sorry that you have had to endure this for such a long time. Grrrrrrrrrr. There should be some high up board that governs psychology that could at least slap some wrists for the gross error in misdiagnosis.

I do so hope that your neurologist can treat you and deal with black outs.

At the very beginning of your treatment some-one should have suggested this test that you have now had.

Heads should roll............

[PurpleFlyingMonkeys]

After much thought on everything I decided to go back to therapy in the last couple days.

I've been in a rut for over a year now and it just seems to get worse. I have no energy at all to do anything. My husband taught my daughter how to write her name (he's her step dad) when it's something I should have done. I just don't have any energy to do it. I have all the motivation in the world but none of the will power it seems.

So I contacted the mental health clinic I was seen at over the summer. They want me to stay with my T. The one who insisted it was DID.

So I called him to tell him the epilepsy diagnosis and see how he was in regards to me and the DID.

Back when I was in therapy, his techniques and everything helped tremendously. I got so far with his help. But when the DID thing started to get going everything went down hill and I didn't feel I was getting any help at all.

So we discussed everything. He said he's 100% positive I have DID. I may have epilepsy but I do still have DID he said. Said he's never been so sure of anyone as he is that I have it. But aknowledges that I was pushed too far with it and said he will work on coping techniques with me for now and when I'm more stable and such he will start work on the DID.

I don't know what in the world to think about this. He helped a lot and is no doubt capeable of helping me with my current issues with anxiety and apparent depression (although I don't feel depressed at all) symptoms. I just don't know about this whole DID thing. I don't want him to sit there and constantly bring it up when I'm having a difficult enough time coping with the epilepsy diagnosis.

He didn't deny the possibility of epilepsy on the phone since I told him they did and EEG that came back with seizure activity but he continued to insist that I was still DID and that it is possible to have both epilepsy and DID.

Uuuuugh I just wish the epilepsy diagnosis was made at a much younger age when I would have been able to decide for myself from first hand experience if everything was seizure or other related. If I had known the possibility of epilepsy at the age it may have started, I wouldn't be so confused.

It all goes back to the accident when I was almost 5. Accident on the interstate. I hit my head on the right side of my head on the front seat. But the head rest had been taken off long before so it just hit the metal really hard. However my brother hit his head on the glass window and split his eye lid open. They rushed him to the hospital and I stayed behind at the car. I remember crying and telling my mom I hit my head and had a bad headache but she said "Not now, I have to go with _____ to the hospital so he can get stitches" and that was that. A few weeks later I had my first blackout. The blackout all the t's and pdocs thought was when the original DID split happen, during a really traumatic event in my life (likely one of the most traumatic of my life)

And I've had them ever since. So now I have no way of knowing what is what, if it is possible for it to be both DID and epilepsy or if it is just epilepsy that takes over when I'm blacked out.

So frustrating! Although during a 12 hour blackout when I was 14, it did not seem seizure related at all. I came out of it interacting with others and in the middle of a discussion doing something completely beyond myself. No ear ringing, no vomiting, no neck pain. Just confusion over what happened the past 12 hours.

But I've had so many blackouts that were like the seizures I had as well.

I just don't know what is going on any more. I never have and it's getting tiring. If they would have just tested me years ago, after a head injury from and accident and years and years as a young child complaining of migraines and out of body experiences, they should have run more tests before sending me to the psychs first.

It happens far too often, and yes it is maddening.

I was diagnosed bipolar for a number of years, and on medication for it, but when I reacted badly to every medication they tried, they re-evaluated me. Of course I'm going to react badly when it's the wrong medication, given for the wrong condition. I am not bipolar. I have recurring major depression, borderline PD, and PTSD. The mood stabilizers they were giving me were too strong. And as for always being sleepy--it turns out that's nothing to do with mental health, even with the conditions I do have. If I'm sleeping a lot, it's not because I'm depressed. I'm not unmotivated or trying to escape from life. I am certainly not lazy. What it is, is sleep apnea. I can't stay asleep long enough for my body to benefit from the rest, before I partially wake up (not aware of doing so) because I'm not breathing. The sleep study showed I was waking up more than 60 times an hour, which means I'm not fully asleep for even as long as a minute. Therefore even after sleeping all night, I'm going to be sleepy the next day. Not my fault, but how many times have I been told to get my fat, lazy you-know-what out of bed; the sun is up, it's a pretty day, and I've slept long enough, but if I'm that depressed maybe I should see my therapist about why I don't want to get up?

My sister went through something similar. She had been hit by a car and sustained a permanent head injury. When certain behaviors started showing up, she was told she had schizophrenia and put on medication, which she refused to take. She did some research on her own and then suggested to her therapist that narcolepsy as a result of the head injury might be the problem instead. The therapist (who keep in mind is not a doctor and has no medical training) responded, "Oh, that's ridiculous. Take your medicine." Guess what, it turned out she had narcolepsy as a result of the head injury, and has never been schizophrenic.

Diagnoses do get changed. It happens all the time. What I find most maddening is when the patient is right, and the professionals aren't listening because we don't have a degree, so what do we know?

[PurpleFlyingMonkeys]

Originally Posted by Lovebird

Diagnoses do get changed. It happens all the time. What I find most maddening is when the patient is right, and the professionals aren't listening because we don't have a degree, so what do we know?

This is what really frustrates me. I've told doctors countless times that all these things they are saying isn't right. When I was diagnosed bipolar, when I was diagnosed schizophrenic, when I was diagnosed depressed, DID, BPD and so many others. They pick and choose the symptoms they want to work with so it will fit nicely into their diagnosis and ignore the rest of the symptoms. Like my T who still insists I have DID. It may be possible but I need to work on my epilepsy diagnosis right now with no added stress of trying to prove wether or not I have DID.

Doctors never seem to listen when I tell them what's wrong. I have reoccuring kidney infections, I'd get them 1-3 times every month for a while for some reason. A few different times it got so bad that there was a lot of blood in my urine. When I was a teen I went to the doctor because I had a kidney infection and blood in my urine and the doctor tells me straight "you don't have a kidney infection and no there isn't blood in your urine" this was said before any tests were run. He ran the tests and uncomfortably gave me the kidney infection diagnosis. It happens all the time and it's frustrating.

And like you the doctors have put me on medication I didn't need countless times. And every time I tell them it makes things worse they think it's because I wasn't given the right brand of medication. Mood stabalizers make me moody, anti depressants make me depressed, anti psychotic meds make me psychotic. They have adverse effects on me no matter what brand. When I got diagnosed DID they were saying I had every other diagnosis in the book as well. I had just turned 14 and was taking 32 pills a day. Most for the mental disorders they claimed and when the meds would give unwanted symptoms, like high blood pressure (at 14) they would keep me on the meds and give me blood pressure medication to take as well. They gave me busbar which made me sick and bed ridden for 4 days, and I mean horribly sick, and wanted to put me on nausea medication so I could continue busbar.

They again think I'm depressed. I've been depressed before but I'm not now. They keep trying to give me anti depressants and no matter how many times I tell them "I wont take it, it's hard enough having no energy, I wont get depressed from the medication" they still send me home with depression medication. The one and only time I had suicidal thoughts was when I was on anti depressants. I don't wish to ever feel that way again.

But apparently they know more about me than I know, they know what medications work even though I've tried them all and they made things worse each and every time.

I need therapy, I don't have good coping mechanisms but I don't need medication. My issues are not chemical related they are from a very difficult childhood and I'm trying to work through it but don't need medications to mess that up.

[avlady]

I feel for both of you, I also have epilepsy, don't know what DID is? I was at one point also told I had MS but nothing was done about it. The doc that told me i had MS was sort of quirkey too. My arms and legs shake if I sit certain ways, then I have to switch positions. I'm on 8 different meds for mental problems too and i think the meds are helping with the MS if i do have it. I know one of the side affects of one of my meds is MS symptoms.

[PurpleFlyingMonkeys]

DID is dissociative identity disorder.

A couple years after my diagnosis of DID I switched psychologists. My psych doctor said he thought it may be epilepsy and not DID. But he never said a thing again about it. Then about 4 years ago I was seeing a new psych doctor for my eating disorder and he too said perhaps it was epilepsy and not DID but everyone always changed their mind and never followed up with it. I guess in part that is my fault, perhaps I should have looked into it but just figured it was a off the wall theory.

Dissociative identity disorder basically comes from really extreme abuse or consistant abuse as a really young child. That does add up for me in that sense. My last therapist who I may be going back to is still insisting I have DID, but aknowledges the epilepsy as well since the EEG came up positive. I just read an article about temporal lobe epilepsy and its relation to DID which was pretty interesting. But leaves me even more confused.

It's all too confusing

Dissociative Identity Disorder

ETA: Just for a little info on DID http://www.webmd.com/mental-health/d...ality-disorder

[avlady]

Thanks for letting me know what it is, i do in fact feel that i could have DID now that I know what it is, been abused and all the other stuff that may go with it.

[ultramar]

I'm so sorry this happened! I think some therapists have their 'pet' diagnoses/issues they like to treat and will have a tendency to look for them under ever rock. And from there, it can become easy to convince the patient that they have this condition --we trust them (or try to) after all, as the experts. It's so so unethical. I think when some diagnoses become 'in vogue' it might happen more with these.

I think some trauma therapists, for example, may have a tendency to diagnose a priori -just make the assumption at the outset- that the patient will have CPTSD or even DID. Then try to fit every symptom or characteristic into these labels. Clinicians need to help and treat the unique individual sitting in front of them, not try to fit them into their own assumptions and pet theories.

I'm sorry about what happened and am glad you are now receiving the proper treatment.

Monkeys: Similar to your kidney infection story, I've had a nurse look at me like I'm stupid when I mentioned possibly being pregnant, and tell me very condescendingly, "Your test came back negative. You are not pregnant." Well, gee, I wonder how it happened that I had a baby eight months later? In fact, the daughter I wasn't pregnant with is sitting in this room with me right now.