[xyzzy]

[epic first post]
My psychiatrist (is pdoc okay here?) is firmly of the belief that I have Bipolar Disorder. The previous pdoc sent me a yellow sheet of paper after every appt saying I was Bipolar 2. I don't think I am.

The person who gave me this diagnosis back in 2003 was one of those "new to the role" pdoc types who was doing a clinic out in the sticks (not that the sticks matter but I think it's why the actual pdoc wasn't there). She wrote BP and that was that. The diagnosis never felt right but Lithium kept me stable for a few years. But over the past 3-4 years it seems to be increasingly obvious to myself and my wife that I really am not BP2 (she has a background in MH nursing). A few months ago I flat out asked the pdoc why he said I was BP because I thought I was not and explained why (the lack of mood swings, no typical behaviours, the fact that on every single list or "quiz" online I score almost nothing for BP). He flicked through my notes saying "It's all here, this is why". He said if the meds are helping does it matter? I lost that discussion.

January 2011 I stopped 1200 Lithium and 400 Lamotrigine overnight (I was physically ill at the time and didn't need the side effects too). Pdoc was really worried, convinced I'd rebound into mania, I had warnings to do this and that, for my wife to ring if it all went weird. And nothing happened except my mood flattened to just below normal (I was diagnosed with depression in 1993). I showed not a single BP trait. Nothing. I DID show some BPD traits, ones I have always had).

Anyway ... I know something is wrong. I don't care if I am Bipolar, Borderline Personality Disorder (BPD), a mix of the 2 or something else. I only care that I can access the right support / services. It's going to matter at some point I reckon. Someone from Rethink comes round to talk to my wife and even that person is of the opinion that I am more BPD, not BP.

I look at crazyboards and I do not identify with anything written in the BP forums. I very much identify with the BPD forums from the description through to experiences. Every list or quiz online shows there is a BPD just as they show no BP. But how to get the pdoc to rediagnose? How can I get him to close my notes and treat me as if I just appeared from somewhere remote that has no notes so he has to start from scratch? What words do I say, or write to make this happen? But......

Is having Borderline Personality Disorder worse from a treatment / perception from other services? If I insisted and he said "Yes, you are right, it's more BPD" then would I be putting myself in a worse position than I am now? I have no idea what resources are available around here (Leicester) but even if there are none would that label be more stigmatizing? I think it may well be but I'm stuck now with the wrong help.

Anyone been successful getting a psychiatrist to agree to a proper re-diagnosis?
Or am I better just keeping on going with what I have?

I'm not after a right answer. Experiences would be great and then I can balance it all out. I should add that the pdoc is a Good Guy. I can talk to him and if he was yours you'd like him too (He works out of the Cedars). I'm not up for a fight or a change of pdoc and I'm not down in the dumps about this - just how to go from here, if anywhere.. And thanks for reading this far

[mld]

Hi and welcome,

You mention BP and BPD. My CPN calls BPD emotionally unstable personality disorder.

She used to have me down as BPD/EUPD, but the psych has seen me psychotic and says its psychotic depression.

Words are words, and sadly one thing to one person means completely another thing to another. So long as the meds work. And mine are antidepressants and antipsychotics and they work (more or less) so it seems the psychotic depression is me, not EUPD.

About yourself. Are you taking meds at the moment, or are you still clear of them?

Good to see you around,
M.

[xyzzy]

emotionally unstable - that's what my last pdoc called me a couple of times but he didn't elaborate. And I am.

Meds - back on. Tried a variety and then either the initial side-effects or the ones that continued after 3 weeks were so bad I stopped. Some like Mirtazapine were horrendous for me. Now it's Lamotrigine 200mg bd. I'm getting increasing side-effects from that which I have not had before which is a part of why I'm looking at if I am getting the right "treatment".

Words are words, and sadly one thing to one person means completely another thing to another. - so true and sadly so. I probably said I had a good few days - meaning my depression lifted to less depression but still depressed - and it will have been noted as "Had a manic episode that week".

I asked for a CPN. I saw two of them for some initial assessment and they said I didn't need one. So GP has changed a few times in the last few years, I've had something like 7 pdocs, no CPN despite me and my wife asking for help, no ongoing mental health outreach as there is nothing they can do and all I'm being offered is a group course for people with Bipolar which is going to be run from the mental health centre. And I'm not BP.

Like so many people in the system we have to tolerate I think I'm in the wrong box with the wrong help but there seems to be no effective way to try and change that.

[CaptSpaceBat]

Personality Disorders are - almost by definition - quite complex, impacting on all areas of a person's life. There are a number of distinct personality disorders, along with "Mixed PD" where criteria of several are present, so a definitive diagnosis may take some time.

This may not seem very helpful, especially as services are often quite fragmented. There is helpful information at http://www.emergence...-your-area.html and http://www.personali...rg.uk/services/

[toffee]

You would be mad to try and get yourself diagnosed with BPD. While treatment may be improving in some places the broad picture is of very poor treatment and extreme stigma. It also has even an even worse impact on employment prospects than Bipolar.

Before you try to get yourself the 'right' diagnosis you could try buying yourself a book on DBT and working through it yourself to see if it helps. If they offer DBT in your area then perhaps it would be worth it, but even with a bipolar diagnosis you are eligible for psychotherapy so you could ask for that.

You are unlikely to get much more help if you have a bpd diagnosis. You are likely to get treated a lot worse by most health professionals. Once you have diagnosis you will still mostly be left to your own devices finding self-help and study online or books. The medication for bpd and bipolar is very similar so you are not missing out there if you keep hte bipolar diagnosis. It is also qite possibile to have bipolar and go long periods 'well' without meds so the fact you didn't have a relapse when you came off meds doesn't necessarily mean you don't have bipolar.

I've got lots of friends who are diagnosed with BPD and I have seen how appallingly they are treated by health services. You really don't want to do that to yourself.

[xyzzy]

Yeah, I knew there would be a negative factor but part of asking here was to establish how much. From the link CaptSpaceBat posted (thanks!) I can see there is nothing there close to me. So maybe the docs have not written anything because they know it would be so bad? But thankfully I'm not in bits, my wife is supportive (and gets support from Rethink) and one goal I have this year is to read more books than last year. Which was 2 - my concentration is extremely poor. (Absolutely recommend Never Let Me Go by Kazuo Ishiguro).

I know the meds stopping and me not bouncing around the place didn't mean I would not but I have never exhibited the symptoms. The initial diagnosis was made without observation or any assessment at a point in my life which was extremely stressful and had been increasingly stressful for at least 3-4 years. It built, I cracked completely, the diagnosis was made. I do believe that she (the first doc) failed to take this into consideration and once she had written that word my future was determined. But that was then, this is now and it's the future I need to deal with.

No idea if psychotherapy is offered in Leicester and has a decent waiting list. I'll ask.

I do think the right diagnosis is the preferred route but I appreciate what you say and your advice I will be taking. That's why I posted here

Any book recommendations? I'm up for that as it would give me more insight, maybe even control. A quick look around Amazon shows a couple of 'workbooks' but as I'm on my own and as I associate workbooks with school or someone involved then they don't seem ideal. So just reading with thinking about actions rather than ticking boxes would be better.

And thank all of you for taking the time to reply.

[Ellie - Rethink]

Hey - Rethink's advice service have this factsheet here on getting a second opinion - http://www.rethink.o...ument.rm?id=703

It might be worth giving them a ring/ email too, they might be able to recommend some 'self help' (hate that phrase!) DBT workbooks. Their details are on the bottom of that factsheet.

theres loads of factsheets including ones on BP & BPD which may just be telling you things you already know but then theres some recommended resources at the bottom of each sheet too which might lead somewhere. http://www.rethink.o...tsheets_az.html

Let us know how you're getting on

E x

[CaptSpaceBat]

I posted this a few weeks ago; slight update:

Quote

DBT - or, in its absence Mindfulness and / or CBT (or MCBT) - can also help in successfully challenging the issues raised by BPD.

Transactional Analysis and Schema Therapies are also posited as offering integrative approaches that help teach self-discovery, self-discipline, and to stop from impulsively using abnormal or harmful coping styles.

You may find access to some of these - especially Behavioural - therapies through your local IAPT (Improving Access to Psychological Therapies) service; see http://www.iapt.nhs.uk/ for further information, along with http://www.nhs.uk/li...http://www.nhs.uk/livewell/counselling/pages/accesstotherapy.aspx and http://www.nhs.uk/Li...http://www.nhs.uk/LiveWell/Mentalhealth/Pages/Mentalhealthhome.aspx

This post has been edited by CaptSpaceBat: 20 February 2012 - 11:49 AM
Reason for edit: formatting

[xyzzy]

Thanks for the links.

I've done a lot of searching on many sites for recommended books and the ones on DBT by Marsha Linehan appear well rated but the problem is they are workbooks. And I can't get someone experienced with DBT to help with them unless I get some assistance from the doc. And he won't give that because he says I'm bipolar. I can't do the workbooks on my own because I cannot correct and reflect my thought processes / coping strategies. And even if I could I don't see any resources in Leics other than West Leics Mind which looks good but it's too far (I don't drive) and probably overworked.

Try and find someone private? No. It goes against my political views on healthcare and - maybe wrongly - I don't trust someone to say "Yes, you are okay now, no need to give me more money each week". There's a bias in there. And the cost cannot be ignored either.

Medication will have a role but it can work so much better in conjunction with a talking therapy so without that.. and changing from the now side-effect laden Lamictal will probably knock my concentration to the point I can't read again.

Ideally I'd see the doc and say "Let's agree off the record that I need more help for the non-bipolar stuff - can you sort that for me?". But he can't - there is nothing for him to do, he can't pretend me into a referral (even if help existed) without saying I'm BPD (or something in the same arena).

The other option is talk to a GP and see if they know of anyone. They have a Mental Health Facilitator every Thursday who I've seen before (all BP related) so it's worth seeing if she knows anything of DBT - from meeting her before though I don't think so. Pity I can't get a CPN.

So like so many people - and I'm not saying I am a special snowflake who deserves better - I'm stuck. Still looking though.

[littlelady]

xyzzy, on 18 February 2012 - 10:02 PM, said:

[epic first post]
My psychiatrist (is pdoc okay here?) is firmly of the belief that I have Bipolar Disorder. The previous pdoc sent me a yellow sheet of paper after every appt saying I was Bipolar 2. I don't think I am.

The person who gave me this diagnosis back in 2003 was one of those "new to the role" pdoc types who was doing a clinic out in the sticks (not that the sticks matter but I think it's why the actual pdoc wasn't there). She wrote BP and that was that. The diagnosis never felt right but Lithium kept me stable for a few years. But over the past 3-4 years it seems to be increasingly obvious to myself and my wife that I really am not BP2 (she has a background in MH nursing). A few months ago I flat out asked the pdoc why he said I was BP because I thought I was not and explained why (the lack of mood swings, no typical behaviours, the fact that on every single list or "quiz" online I score almost nothing for BP). He flicked through my notes saying "It's all here, this is why". He said if the meds are helping does it matter? I lost that discussion.

January 2011 I stopped 1200 Lithium and 400 Lamotrigine overnight (I was physically ill at the time and didn't need the side effects too). Pdoc was really worried, convinced I'd rebound into mania, I had warnings to do this and that, for my wife to ring if it all went weird. And nothing happened except my mood flattened to just below normal (I was diagnosed with depression in 1993). I showed not a single BP trait. Nothing. I DID show some BPD traits, ones I have always had).

Anyway ... I know something is wrong. I don't care if I am Bipolar, Borderline Personality Disorder (BPD), a mix of the 2 or something else. I only care that I can access the right support / services. It's going to matter at some point I reckon. Someone from Rethink comes round to talk to my wife and even that person is of the opinion that I am more BPD, not BP.

I look at crazyboards and I do not identify with anything written in the BP forums. I very much identify with the BPD forums from the description through to experiences. Every list or quiz online shows there is a BPD just as they show no BP. But how to get the pdoc to rediagnose? How can I get him to close my notes and treat me as if I just appeared from somewhere remote that has no notes so he has to start from scratch? What words do I say, or write to make this happen? But......

Is having Borderline Personality Disorder worse from a treatment / perception from other services? If I insisted and he said "Yes, you are right, it's more BPD" then would I be putting myself in a worse position than I am now? I have no idea what resources are available around here (Leicester) but even if there are none would that label be more stigmatizing? I think it may well be but I'm stuck now with the wrong help.

Anyone been successful getting a psychiatrist to agree to a proper re-diagnosis?
Or am I better just keeping on going with what I have?

I'm not after a right answer. Experiences would be great and then I can balance it all out. I should add that the pdoc is a Good Guy. I can talk to him and if he was yours you'd like him too (He works out of the Cedars). I'm not up for a fight or a change of pdoc and I'm not down in the dumps about this - just how to go from here, if anywhere.. And thanks for reading this far

hi xyzzy
I feel your pain, and confusion and I wanted to say your not alone. I also think I have BPD but cant get the drs to give me a diagnoses
they have said I have a Personality disorder but not which one, like you I have taken many of the online tests and I have 8 out of the 9 traits and in one test I scored 95% for BPD I have not got a pdoc they wont give me one, but I have got my first app with the CPN on march 8th.
I live in south Wales and there is literaly no help anywhere near me for personality disorders, at the moment the only meds im on is Trazadone 100mg at nite for depression and to help me sleep and I also have phenergan 25mg to take with the Trazadone when Desprate, im desperate every night to sleep I dont sleep till about 4-5am
I hope we are both able to find the answers and the treatment that we seek.
good luck Chelle xx

[dymphna]

'Does it matter?'

Does it matter?! Heck, yes! It matters very much. Whatever you do try and avoid the personality disorder tage in whatever form it comes. What Toffee says on this is absolutely right, mark their words:

'I've got lots of friends who are diagnosed with BPD and I have seen how appallingly they are treated by health services. You really don't want to do that to yourself.'

I got labelled personality disorder nearly 37 years ago and it has poisoned my life ever since. You will be far more likely to be left on your own without support in all matters compared to those with say a schizophrenia (now called schizo affective disorder) or depression etc.

Personality disorders aren't classed as illnesses anyway but what often happens, as with me, is that you get all the disadvantages of being labelled ill without any of the advantages (help with housing etc).

Fortunately I don't buy into any of those 'mental illness' stuff and have made a life for myself. But I have had to use all my wits and savvy, exercise sleight of hand and got up to all kinds of ways to divert attention from anyone finding out about this ridiculous label.

If you really find it helpful to get what you call a diagnosis, try to go for bi-polar - you will be treated with far more respect.

Sorry I should have typed 'tag' not 'tage'.

Blimey, I replied to myself to correct an error and it was included in the same post! Wonder if this one will too?

[xyzzy]

dymphna, on 21 February 2012 - 09:26 AM, said:

'Does it matter?'

Does it matter?! Heck, yes! It matters very much. Whatever you do try and avoid the personality disorder tage in whatever form it comes. What Toffee says on this is absolutely right, mark their words

'I've got lots of friends who are diagnosed with BPD and I have seen how appallingly they are treated by health services. You really don't want to do that to yourself.'

And that's why I am asking. I don't want to push for something that will have consequences I do not understand fully. And the place to ask is somewhere like here where there is a ton of knowledge and experience. That's was what I wanted to tap into and I am glad I did. I will not be pushing for any sort of 2nd opinion, to be re-diagnosed or similar.

dymphna, on 21 February 2012 - 09:26 AM, said:

If you really find it helpful to get what you call a diagnosis, try to go for bi-polar - you will be treated with far more respect.

I've got that already, had it since 2003. I think it's wrong but it's mine and from everything posted here it will stay that way.

Thank you for all the replies. I really do appreciate it.

[toffee]

Sorry if we are coming on a bit strong. I know you were just (sensibly) asking). I've just seen such appalling treatment of people as a result of this diagnosis that it creates strong feelings.

I will try and think of some books for you. Im not at home this week so can't check the name of the one i bought that was really good and is really useful for bipolar as well. It is something like 'overcoming (or understanding) strong emotions and self destructive impulses'. Most of these things do have 'activities' as well but i know that one has plenty that you can just read and is still very helpful. Which criteria do you think you meet for the diagnosis? There might be useful books for aimed at particular things like anger.

[toffee]

toffee, on 22 February 2012 - 12:28 AM, said:

Sorry if we are coming on a bit strong. I know you were just (sensibly) asking). I've just seen such appalling treatment of people as a result of this diagnosis that it creates strong feelings.

I will try and think of some books for you. Im not at home this week so can't check the name of the one i bought that was really good and is really useful for bipolar as well. It is something like 'overcoming (or understanding) strong emotions and self destructive impulses'. Most of these things do have 'activities' as well but i know that one has plenty that you can just read and is still very helpful. Which criteria do you think you meet for the diagnosis? There might be useful books for aimed at particular things like anger.

just asked my friend. www.dbtselfhelp.com is a site that is really useful and has a group that you can do it with.

[xyzzy]

toffee, on 22 February 2012 - 12:28 AM, said:

Sorry if we are coming on a bit strong. I know you were just (sensibly) asking). I've just seen such appalling treatment of people as a result of this diagnosis that it creates strong feelings.

Really - you have nothing to apologise for, no-one has. I'd far rather hear how it actually is. The last post I would have wanted to make would be "I should have asked before, look what I've done". Strong opinions are good.

Books. I just bought Radical Acceptance by Tata Brach but have yet to start reading it. Velvet Elvis at crazyboards spoke well of it in a thread I found. I won't be buying any sort of workbook - as I said above somewhere I don't see how that can correct faulty thinking when you have no-one to challenge/correct you.

As for which one - Borderline scores highest on most though one (I forget the site but it said it measured several types and presented a little graph at the top of the page when done) I topped on Schizoid (which is why I remember it). But 50 questions don't make a diagnosis. (In contrast every Bipolar 'quiz' shows I have or possibly have a depressive disorder. I know that and don't dispute that part). My history shows something is wrong - and that's what is annoying - the doc just sees one word.

So a couple of books and reading forum posts is it right now. And that's not terrible. Not sure what to say to the doc when I see him. "How've you been?" he'll say. "Not bipolar" I might reply.

@littlelady - good luck with the CPN. I hope they can be part of the solution for you.

[yorkiegal]

when my diagnosis was depression i had a sympathetic response from the doctors and pdocs. trouble was that over the years i kept relapsing into depression and the therapy didn't work.

then i was given the BPD diagnosis. I say 'given'. they wrote it on my discharge form from hospital. nobody actually thought to explain it to me and i had to go home and look it up.

When i applied for my notes they made interesting reading. Turned out the reason I am denied a cpn or any help from the crisis team is because people with bpd react badly to relationships ending and so they thought it wasn't worth the risk of giving me a cpn who wouldn't be there forever.

After being in hospital for a month they also put on my notes that i wouldn't benefit from a long hospital stay in the future due to being bpd and manipulative on the ward.

since then, no therapy. But after hearing from friends with bpd about how helpful an anti psychotic can be i managed to see my pdoc again and she put me on quetiapine. She added 'psychotic symptoms' to my diagnosis.

She has repeatedly told me and put in my notes that i show no sign of mental illness. Even though for years I was diagnosed with depression.

My gp doesn't even want to see me anymore and told me to just go onto a repeat prescription. So nobody actually checks to see if i'm ok. I just get a reminder for a blood test every year.

I'm all therapied out though lol so that doesn't bother me. tbh i think my bpd symptoms have reduced a lot in the last year, but the psychotic symptoms are still there on occasion. I would much prefer a non PD diagnosis but at the same time I accept that I do exhibit a lot of bpd traits. I just wish it was seen as a mental illness in the UK as it is in other countries. It's that whole feeling of ''you're not ill you're just bad'' that you get from the health professionals. Like the depression isn't real.

[Tincan]

i can understand ur need to get the correct diagnosis for ur condition and seek the right treatment . its confusing when ur exhibiting signs of one illness but diagnosed with another. i used my diagnosis as a starting point something to work from then move myself forward from there .it was hard to accept at first and a label i lived by but i decided yer i av that diagnosis am thankful i have an illness and not mad now its a journey of self development. im am in a gd place but because my psychiatrist hasnt seen me unwell wonders how i have got to this point of my recovery when others havent done as well . therefore questions my diagnosis a bit diff to yourself where professionals are reluctant to change there stance although they can see ur illness in front of them . they are very reluctant to give u a label so to speak these days esp mine scitzophrenia because u are classed as unemployable it seems. im not sure what u can do u are entitled to look at ur medical notes if u require i think maybe thats a starting point give u an idea y they believe u are the diagnosis they av given .then if u feel the need question it from there .

[manic666]

i said to one shrink i am bipolar 1 , he said you can be what you like if thats what you think, but do you really want to go on to mind blowing meds ,with more side effects , because your doing allright now on you own meds, point taken.

[Tincan]

manic666 agreed we are not the illness patients or 1 in 4 statistic if we are on tabs that make us functional fair play who cares about the label .

[xyzzy]

manic666, on 25 February 2012 - 11:18 AM, said:

i said to one shrink i am bipolar 1 , he said you can be what you like if thats what you think, but do you really want to go on to mind blowing meds ,with more side effects , because your doing allright now on you own meds, point taken.

True, very true. Though I need to see him soon about my Lamictal. When I first went on it years ago I was fine. Now since I went back on I have somnolence, feeling like I'm going to throw up constantly and headaches mean I want off it.