Anyone else had a diagnosis that was changed, without their knowledge?

[Flippy]

I think I'm probably posting this in the correct section. I just had an appointment today, the upshot was that maybe I needed to try a new medication. I mentioned one of the meds I was offered when I got my diagnosis more than a decade ago. Was told that there was surprise that I had been offered it as it wouldn't be appropriate for me. I am holding back on mentioning my diagnosis right now because A: I feel like a total idiot now. B: I kinda worry that they may end up reading this so I don't want to draw attention to it. Though I have mentioned it in these forums before. Probably just some healthy paranoia. Has anyone else had this happen? I thought I knew what I was dealing with so it made recovery seem possible. In fact for a good while I felt much better, and all the doctors and nurses who helped me always referred to my original diagnosis. I've been told that there's no mention of it in my medical notes, which has me puzzled to say the least. At first upon hearing this I though I don't really care what they call it. But now it's started to sink in and I feel a bit like it's blown my last fuse!

 

[Squiddy]

My diagnosis changed from schizoaffective disorder to bipolar 1 without my knowledge. I didn't know til a few years later. Another diagnosis I had which I did know about was Asperger's

 

[Flippy]

That's quite a journey! Why do they think it's such a good idea to keep it from the patient? I mean if I was diagnosed as diabetic surely they might think to mention it!? Glad I'm not alone but I wish they had been up front with you too to begin with.

 

[seho_j]

Not changed, but I had a secret diagnosis without my knowledge. I knew that I had depression and general anxiety disorder. However, after months, I found out I was also diagnosed with a panic disorder even though I don't think I've ever had a panic attack. I think I would know if I had a panic disorder so I don't understand this at all.

 

[Flippy]

So that's two people in quite short order! I've had some panic attacks, the more severe ones started happening in the last couple of years or so. They are pretty hard to miss, though I never had them to the extent where I'm gasping for breath like they have been more recently. I had one or two in the past but that literally felt like, well, panic. Shortness of breath high anxiety and just came from nowhere. I'm sorry they have kept the diagnosis from you and that it feels like it doesn't fit. :-(

 

[Squiddy]

That's quite a journey! Why do they think it's such a good idea to keep it from the patient? I mean if I was diagnosed as diabetic surely they might think to mention it!? Glad I'm not alone but I wish they had been up front with you too to begin with.

I'm not sure. Though come to find out years later, I don't have asperger's

 

[Flippy]

I'm not sure. Though come to find out years later, I don't have asperger's

Christ they've given you a hell of a time by the sounds of it. Starting to wonder if the number one psychiatry tool is some sort of diagnosis dice?

 

[Squiddy]

Christ they've given you a hell of a time by the sounds of it. Starting to wonder if the number one psychiatry tool is some sort of diagnosis dice?

I'm also diagnosed with anxiety

 

[Flippy]

I'm also diagnosed with anxiety

That's what I have too. It fecking sucks! :-(

 

[Squiddy]

That's what I have too. It fecking sucks! :-(

Yeah it does

 

[Flippy]

Does anything help with your anxiety?

 

[Squiddy]

Does anything help with your anxiety?

Talking to friends sometimes helps me

 

[Flippy]

Talking to friends sometimes helps me

I end up quite isolated because of mine. I don't tend to talk about it to anyone, or when I do start I don't shut up. Which can make things awkward, more anxiety usually follows. :-(

 

[Squiddy]

I end up quite isolated because of mine. I don't tend to talk about it to anyone, or when I do start I don't shut up. Which can make things awkward, more anxiety usually follows. :-(

Sometimes, I'll also just sleep it off

 

[NaNo210]

Yeah I had a secret diagnosis made. Here's the story of how it happened.

Initially I had anxiety + anorexia for several years, but experienced a sudden depressive phase for a month, which prompted a mental health assessment. Wasn't told anything about the outcome but just that I'd need a referral to a psychiatrist as it was 'complex' (I just assumed eating disorder made things a bit confusing regarding therapies).
I didn't really follow up anything so continued taking my meds for 6 months which had started working by then, walked in to a regular review appointment with a different doctor, as my usual one didn't have any appointments that week. I talked about feeling tired and lack of focus on the medication, and he started spouting off saying 'the thing about people with personality disorders is....' and I was shocked. Personality disorder?! Have you read the right persons notes?? I haven't even had a diagnosis as I never went to the psychiatrist! He shooed me out of the door quickly after that. I was completely confused so had to chase it all up.

He was reading the right notes, turned out I'd landed a BPD diagnosis from that assessment, and my usual doctor had kept me in the dark about it the entire time. The person doing the assessment wasn't a psychiatrist, or specialist to be able to make a diagnosis for anyone- which was wrong. I went round over and over again trying to understand how it happened. Eventually I saw a private psychiatrist who diagnosed me with complex PTSD, with potential BPD. But all the help available where I am is under the BPD umbrella. I stopped all medication until I could clarify what was actually going on as I didn't trust my care with the original doctors anymore.

The sudden casual dropping of quite a serious diagnosis made me extremely suicidal at the time. For a long time I felt like it was a curse that followed me from my upbringing.

 

[Flippy]

Yeah I had a secret diagnosis made. Here's the story of how it happened.

Initially I had anxiety + anorexia for several years, but experienced a sudden depressive phase for a month, which prompted a mental health assessment. Wasn't told anything about the outcome but just that I'd need a referral to a psychiatrist as it was 'complex' (I just assumed eating disorder made things a bit confusing regarding therapies).
I didn't really follow up anything so continued taking my meds for 6 months which had started working by then, walked in to a regular review appointment with a different doctor, as my usual one didn't have any appointments that week. I talked about feeling tired and lack of focus on the medication, and he started spouting off saying 'the thing about people with personality disorders is....' and I was shocked. Personality disorder?! Have you read the right persons notes?? I haven't even had a diagnosis as I never went to the psychiatrist! He shooed me out of the door quickly after that. I was completely confused so had to chase it all up.

He was reading the right notes, turned out I'd landed a BPD diagnosis from that assessment, and my usual doctor had kept me in the dark about it the entire time. The person doing the assessment wasn't a psychiatrist, or specialist to be able to make a diagnosis for anyone- which was wrong. I went round over and over again trying to understand how it happened. Eventually I saw a private psychiatrist who diagnosed me with complex PTSD, with potential BPD. But all the help available where I am is under the BPD umbrella. I stopped all medication until I could clarify what was actually going on as I didn't trust my care with the original doctors anymore.

The sudden casual dropping of quite a serious diagnosis made me extremely suicidal at the time. For a long time I felt like it was a curse that followed me from my upbringing.

That sounds like an awful shock! To have it just casually dropped in your lap like that! I did start to wonder too if I had inherited someone else's medical records! My head was spinning a bit, and I did hear the words "personality disorders...people who have them can have..." I'm not sure I took in what they were saying properly. I don't know if it was a reference to me as 11 years were kinda flashing through my head at the time. Thing is my old diagnosis was given by a consultant psychiatrist. I'm pretty sure I didn't dream it up.

They kept on refering to my medical records being from an area I haven't lived in for nearly two decades. They said that there was some references to potential indications of my old diagnosis but no actual diagnosis. Either there's a huge chunk of my records missing or somehow I've ended up with two sets of records and they are reading some that predate my diagnosis. Or they just didn't look at them hard enough.

It's really annoying that this has happened to other people. I think it can be so damaging! :-(

Sometimes, I'll also just sleep it off

Sleep is often the best medicine. :-) I wish I found it easy to sleep :-) I wish that I found it more difficult to wake up :-(

 

[NaNo210]

That sounds like an awful shock! To have it just casually dropped in your lap like that! I did start to wonder too if I had inherited someone else's medical records! My head was spinning a bit, and I did hear the words "personality disorders...people who have them can have..." I'm not sure I took in what they were saying properly. I don't know if it was a reference to me as 11 years were kinda flashing through my head at the time. Thing is my old diagnosis was given by a consultant psychiatrist. I'm pretty sure I didn't dream it up.

They kept on refering to my medical records being from an area I haven't lived in for nearly two decades. They said that there was some references to potential indications of my old diagnosis but no actual diagnosis. Either there's a huge chunk of my records missing or somehow I've ended up with two sets of records and they are reading some that predate my diagnosis. Or they just didn't look at them hard enough.

It's really annoying that this has happened to other people. I think it can be so damaging! :-(

I'm sorry this happened to you too. I must ask, are you also in the U.K.? Just it sounds familiar as this happens a lot with the NHS. Chasing up is a nightmare too as everything is so slow and disorganised. Nobody would give me answers, or a copy of notes made which lead them to the diagnosis. If that GP hadn't have let it slip, I would be here now years later not having a clue that I'm being treated under that diagnosis and it would be another lost fragment as I've moved again.

It may be worth trying to pull as many full medical records yourself as possible, this is what I was planning to do, but I didn't have the energy as it involves also contacting all the CMHTs, hospitals and social services etc and some of the things are upsetting. But it seems like the only way to get a full picture and see what is missing.

There are also guidelines which mention that professionals may keep a personality disorder diagnosis from the patient 'for their own good'. I personally think this is infantilising, especially when you consider the use of medications like antipsychotics etc. The patient has a right to know why a medication is being prescribed as well as their own diagnosis.

 

[Flippy]

I'm sorry this happened to you too. I must ask, are you also in the U.K.? Just it sounds familiar as this happens a lot with the NHS. Chasing up is a nightmare too as everything is so slow and disorganised. Nobody would give me answers, or a copy of notes made which lead them to the diagnosis. If that GP hadn't have let it slip, I would be here now years later not having a clue that I'm being treated under that diagnosis and it would be another lost fragment as I've moved again.

It may be worth trying to pull as many full medical records yourself as possible, this is what I was planning to do, but I didn't have the energy as it involves also contacting all the CMHTs, hospitals and social services etc and some of the things are upsetting. But it seems like the only way to get a full picture and see what is missing.

There are also guidelines which mention that professionals may keep a personality disorder diagnosis from the patient 'for their own good'. I personally think this is infantilising, especially when you consider the use of medications like antipsychotics etc. The patient has a right to know why a medication is being prescribed as well as their own diagnosis.

You are correct, I live in the UK. I moved quite recently, before that I had moved 3 years prior. I put it in one of my other posts that my new doctor at the time was being really insistent that he couldn't give me my meds. He kept on saying it had to be prescribed or mandated by a psychiatrist. He told me that they hadn't received my medical records. So I was quite worried that I was going to run out and get the physical withdrawals, not to mention the potential effects on my mood. He then discover apparently my medical records had picked that moment to arrive.

I'm really sorry that they managed to put you through a similar experience with your medical records. As you might expect, I'm just not in a position to do much about it due to lack of energy and general feeling like crap. Ive been told in the past that I can request my medical notes but I always felt reading them might just make me feel worse. Much like I can't read my degree dissertation as I remember how unwell I was when I wrote it. I got a first class for it, but I almost feel like if I read it, it will somehow be just the rantings of some crazy person.

It seems completely stupid to conceal a diagnosis from someone, particularly if they have a personality disorder, I don't know but I think it helps to know the thing you are trying to overcome. I'm glad that you found out. It's just a really crap way to find out :-0

I'm now thinking if my diagnosis was not correct then why did they prescribe me the meds. It did seem to make a massive difference to me. But I only took it as I thought I was taking it to help with my condition so it was worth some side effects to stay safe. Now I feel like I put up with the side effects for no reason. :-(

 

[Flippy]

Just want to thank everyone for their posts and advice. I've had a bit of a shock and it's wobbled me a bit. Having given it a lot of thought, I think my previous diagnosis was the right one. There's got to be some evidence of it somewhere. I didn't just dream it up as I find it unlikely I would have been given the meds in the first place. I have been a little concerned that may be withholding another diagnosis alone the lines of what @NaNo210 talked about. That would seriously suck! But I think that maybe due to them deciding my diagnosis is incorrect that I haven't been receiving appropriate treatment. This might explain to some degree, I think, why despite the extra meds I've been given I haven't really gotten better, and why I'm experiencing a regular swing in my moods every 3-4 months.

 

[Squiddy]

That sounds like an awful shock! To have it just casually dropped in your lap like that! I did start to wonder too if I had inherited someone else's medical records! My head was spinning a bit, and I did hear the words "personality disorders...people who have them can have..." I'm not sure I took in what they were saying properly. I don't know if it was a reference to me as 11 years were kinda flashing through my head at the time. Thing is my old diagnosis was given by a consultant psychiatrist. I'm pretty sure I didn't dream it up.

They kept on refering to my medical records being from an area I haven't lived in for nearly two decades. They said that there was some references to potential indications of my old diagnosis but no actual diagnosis. Either there's a huge chunk of my records missing or somehow I've ended up with two sets of records and they are reading some that predate my diagnosis. Or they just didn't look at them hard enough.

It's really annoying that this has happened to other people. I think it can be so damaging! :-(

Sleep is often the best medicine. :-) I wish I found it easy to sleep :-) I wish that I found it more difficult to wake up :-(

I also wished I found it more difficult to wake up. Just woke up now and I wish something had killed me in my sleep

 

[Flippy]

I also wished I found it more difficult to wake up. Just woke up now and I wish something had killed me in my sleep

I hear you! Sometimes it's the only way I can sleep if I fantasize that I will ctb in my sleep! I watched the first episode of Star Trek Picard last night (I'm a a bit of a Trekkie) Picard says at one point "The dreams are wonderful, it's the waking up I don't much like." I may be slightly paraphrasing. I thought that pretty much summed it up for me! :-/

 

[Squiddy]

I hear you! Sometimes it's the only way I can sleep if I fantasize that I will ctb in my sleep! I watched the first episode of Star Trek Picard last night (I'm a a bit of a Trekkie) Picard says at one point "The dreams are wonderful, it's the waking up I don't much like." I may be slightly paraphrasing. I thought that pretty much summed it up for me! :-/

Maybe one day, our dreams will come true

 

[Flippy]

Maybe one day, our dreams will come true

I hope so, I if not then I hope we can at least have some better dreams. :-)

 

[Squiddy]

I hope so, I if not then I hope we can at least have some better dreams. :-)

Yeah :)