Trying to get a proper diagnosis

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Paul57

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Trying to get a proper diagnosis
« on: December 28, 2018, 07:16:29 PM »
Hi all. Iím trying to assess how much trouble I will have with the medical establishment over this semi self-diagnosis. It isnít in The DSM-V (dropped it at the last minute amidst controversy). Here is the World Health Organizationís definition

https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/585833559

After successfully keeping my life mostly positive with a diagnosis of Major Depressive Disorder and Generalized Anxiety Disorder, the DSM-V came out, I changed GPs and things went downhill. All of a sudden I was diagnosed Bipolar II by one Pdoc and BPD by another. There are symptoms in both (violence, narcissism, risky behaviour, etc.) that I have never manifested. C-PTSD fits me perfectly.

compound this by my basically being locked out of the mostly useless Ďmental health care systemí here in NS, I have basically been untreated for years now.

Has anybody here had any experience with this diagnosis? Ant thoughts/advice on getting this diagnosis recognized? Iím at a point where I canít even leave the apartment by myself. Life is just pure misery and I canít get any help.
« Last Edit: December 28, 2018, 10:40:27 PM by Paul57 »

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Rainagain

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Re: Trying to get a proper diagnosis
« Reply #1 on: December 28, 2018, 08:23:06 PM »
Hi Paul,

Are you getting any treatment for the diagnoses you already have?

I have major depressive disorder diagnosis and the treatment for that seems the same as for cptsd, meds and talk therapy?

If you could get the mdd treated it might help you even without a full and accurate diagnosis?

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Three Roses

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Re: Trying to get a proper diagnosis
« Reply #2 on: December 28, 2018, 10:22:45 PM »
Hi Paul,

The link you provided takes me to a page that says "Not Found."  :Idunno:

In a reply to a post (http://cptsd.org/forum/index.php?topic=11333.msg81430#msg81430), kizzie said this :

Quote
Many of us here self-diagnose... mainly because physicians and mental health professionals do not yet know about Complex PTSD/Trauma, in particular in situations such as workplace abuse. 

However, many do and this is reflected in the fact that the International Society for Traumatic Stress Studies has a Complex Trauma Special Interest Group - https://www.istss.org/about-istss/special-interest-groups/complex-trauma-sig.aspx.  Also, while Complex PTSD/Trauma is not yet in the APA's DSM as an official diagnosis, it has just been included in the WHO's ICD and much of that is due to the push by mental health professionals to have it recognized so that people like us around the world can get the treatment, services & support we so need whether it's because of abuse in childhood or adulthood. 

I guess my point is don't let ignorance stop you from what you know to be true. Keep trying to find a GP and/or T who is knowledgeable and will help you, not tell you you are just too sensitive.  Abuse in the workplace is a very real issue which

There are many treatments gaining in popularity (such as EMDR, biofeedback, etc) that treat the brain itself, not just the mind. Things are changing, the omission of cptsd from the last DSM is a topic that's been widely discussed  :pissed: here.

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Paul57

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Re: Trying to get a proper diagnosis
« Reply #3 on: December 28, 2018, 10:41:49 PM »

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Blueberry

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Re: Trying to get a proper diagnosis
« Reply #4 on: December 28, 2018, 11:03:33 PM »
Iím trying to assess how much trouble I will have with the medical establishment over this semi self-diagnosis.

It's hard to say how much trouble. I was dismissed for quite a number of years with my self-diagnosis, but I persevered (on and off). One psychiatrist I went to for a while is known as a trauma specialist round here, but now I realise that she was specialised for ptsd and quite simply didn't recognise cptsd caused by childhood neglect and covert-seeming abuse. So she told me I had Narc PD. I've heard BPD quite a few times too over the years. I finally asked my gp if he'd put cptsd in my file "because that's what's behind it all" and he did. Up till then I had "depressive episode", which I thought very strange because depression went on for years, not just episodes, and I also had a long list of descriptive diagnoses (eating disorder, psychosomatic pain, anxiety etc). Since my gp added cptsd, the diagnosis has been more or less accepted and the long list has been much reduced because many of the descriptive diagnoses are part of my blend of cptsd. I'm not in NS or even in the same country as you. In my country they give you code number for ptsd and then specify "complex ptsd", or at least that has been the case for a number of years now.

My NPD diagnosis came about 15 years ago and never actually ended up in my file, because my gp decided I shouldn't continue with that psych, fortunately. Although cptsd is still not recognised as often as it actually exists i.e. there is still too much ignorance among docs, therapists, psychologists etc, it is getting better. otoh depending upon where you live - well that will affect things too. If your experience of your local mental health care system is "mostly useless", then that doesn't sound very encouraging, unfortunately. 

I hope you can get some encouragement and begin step by step on some form of self-healing just from this website and forum. There is a lot of very useful and up-to-date information to be found on here, lots of links. Also lots of mutual support, validation and encouragement on the forum. That was my impression long before I became a mod ;)

On healing / self-healing: baby steps count in cptsd! Just starting to write here and asking a question is a step, or two steps in fact. Good luck and hope to see you around the forum!
« Last Edit: December 28, 2018, 11:08:43 PM by Blueberry »

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Paul57

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Re: Trying to get a proper diagnosis
« Reply #5 on: December 30, 2018, 12:26:49 AM »
Hi Paul,

Are you getting any treatment for the diagnoses you already have?

I have major depressive disorder diagnosis and the treatment for that seems the same as for cptsd, meds and talk therapy?

If you could get the mdd treated it might help you even without a full and accurate diagnosis?

Hello, yes, I have been treated for depression for 25 years, but mostly with SSRIs. There is basically no mental health care in our local community medical services (in name only) and I have seen several private therapists who have no practical suggestions.

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Boatsetsailrose

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Re: Trying to get a proper diagnosis
« Reply #6 on: January 03, 2019, 11:22:18 AM »
Hi paul and all
Is cptsd not going into the next icd 11 ? I thought it was ?

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Boatsetsailrose

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Re: Trying to get a proper diagnosis
« Reply #7 on: January 03, 2019, 11:26:43 AM »
Oh i see it is in the icd but not dsm ? Do some countries only use dsm ?
Im in the UK

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Boatsetsailrose

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Re: Trying to get a proper diagnosis
« Reply #8 on: January 03, 2019, 11:29:14 AM »
I've just looked dsm is the american diagnostic manual and icd global ...
Does USA not recognize icd ?

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sj

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Re: Trying to get a proper diagnosis
« Reply #9 on: January 03, 2019, 02:11:29 PM »
Hi Paul
I am going to preface my response by saying I am in Australia and working with the system here, which seems to differ in some key ways to systems in other countries. That means I do not know which parts of my approach can translate well to you where you are based. You also mentioned some availability issues for mental health support in your area. But perhaps there might be something which is of potential use.

I've had 3 psychologists acknowledge and support CPTSD, but I'm not sure if that counts as an 'official' diagnosis. I don't think it is truly possible in my country, given the DSM failure to accept it yet. But I requested my current psychologist write that term in her required correspondence with my GP so that it would be in my medical files also. I think an earlier one mentioned it, and previous GP mentioned 'trauma', so I had the beginnings of 'paper trail' a few years ago. I have recently relocated and will need to find a new GP. I requested support and introduction letters from both my previous GP and my psychologist for potential new GP, and both letters are really good. The psychologist references CPTSD and the GP letter says things that support what the psychologist has said, even though they don't mention that term. I feel better knowing that once I find a new GP I feel adequately trusting of, these documents will go on my file.

What I have done, and will continue to do, is to specifically research psychologists who advertise themselves as working with CPTSD, so I won't even see one who hasn't got that stated as part of their practice area (I also 'interview' new GPs in order to find one that 'fits' for me as best as possible). In Australia we have an organisation called the Blue Knot Foundation which focuses on adults with complex trauma, so I called them and was emailed a list of various counsellors and psychologists who had completed training with them. Perhaps there is something like that where you are? Might be some places you can contact to start making enquiries along those lines?

Now, for the record, I've also had mixed results with those therapists - one in particular ended up being all theory but no embodied grasp, so it was unfortunately rather re-traumatising for me. She wrote a report with a frustrating mix of really useful things and really biased and disempowering things (and a lot of errors), which I ended up declining. I mention this because I think we are still in such early days of CPTSD therapeutic approaches that we still need to be very much our own advocates in therapy and can't always assume the 'experts' know best. But even the 'negative' psych wrote some really clear stuff about my CPTSD, referencing my ACE score and generally coming from a professional-sounding place that completely legitimises that as my diagnostic reality.

So, my experience has been that I have really had to do the research to find the therapists who are already attuned to CPTSD. I've then requested my GP to write referrals to them as part of my Mental Health Care Plan (10 subsidised clinical sessions in a year, though I have paid full price for extra sessions, also). Having an established relationship with the psychologist and working with them for some time within the context of CPTSD, they have been able to start writing things about that which get referred back into GP records. The supporting documentation can start to accumulate and this, as far as I'm concerned, is how the narrative of CPTSD - of what makes most sense to my experience - becomes accepted. If I have my records transferred to a new GP, this is the narrative they are inheriting. I have dx of Depression and Anxiety, as well as a couple of physical health conditions, but have made sure I do not get involved with anyone, or go along with any discussion, which suggests other dx which I feel are innacurate and unhelpful - eg; BPD or bipolar (I've had one GP float BPD coz of emotion regulation issues, as well as ADHD for focus and processing issues, but all of that belongs under CPTSD, so why collect more of the alphabet than necessary?). I'm ok with sticking with the Depression and Anxiety as they are not so stigmatised, so inherited narratives are less potentially damaging.

What I am describing is a bit of a 'long-game' approach which I continue to refine with experience - both positive and negative - and other learning. But this is part of how I advocate for and empower myself within a system which is too often seriously messed up and damaging. And I truly hope I am not overwhelming you with the 'long-game' concept, but I do mean to impart a sense that if you have the capacity to start directing your own care from an increasingly informed place, then that may be how you can start to get the recognition and support you need from The System.

Apologies if this is an irrelevant, long-winded ramble, but I really hope something I've said here will be of use to you.

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Boatsetsailrose

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Re: Trying to get a proper diagnosis
« Reply #10 on: January 03, 2019, 02:34:02 PM »
Hi paul and sj
Thank you for your post sj ...good to.read as this is a smiliar tact to what I'm taking with my journey
Blue knot is great

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Paul57

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Re: Trying to get a proper diagnosis
« Reply #11 on: January 06, 2019, 11:38:16 PM »
Hi paul and all
Is cptsd not going into the next icd 11 ? I thought it was ?

Hi, it already is. Sorry, hereís the updated link:

https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/585833559

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Paul57

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Re: Trying to get a proper diagnosis
« Reply #12 on: January 07, 2019, 02:35:41 AM »
Thanks everyone for your input. Iím in Canada which no longer has a medical system per se. I can't change GPs  and have been blackballed by community health (ďBPDĒ, ďnot worth treatingĒ, etc.)

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Blueberry

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Re: Trying to get a proper diagnosis
« Reply #13 on: January 07, 2019, 06:58:49 PM »
I'm sorry your experience of the local medical system is so bad. I don't live in Canada so I have no idea there. I just know that I'm pretty well off medical system-wise. Though I have heard the "BPD" / "therapy-resistant" kind of put-downs too.

There are others on this forum who don't get any kind of diagnosis or much of any treatment, or who are maybe on waiting lists for a very long time before they can see anybody. What you can do in that sort of situation is use the tools available on the website in general and on the forum. Check the Resources section. Check Pete Walker's books, or even his website if you don't have the money for books. There's lots of information available.    https://cptsd.org/forum/index.php?board=49.0 is pretty useful too, ways mbrs have found of improving things for themselves for even 3 minutes a day in self-care. And there's lots of encouragement and validation on and from the forum. Good luck.

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Boatsetsailrose

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Re: Trying to get a proper diagnosis
« Reply #14 on: January 07, 2019, 08:28:35 PM »
Thanks Paul ...
I don't get fired up greatly in life anymore (especially with sedation of anti dep ) but i keep hearing of people getting a bpd label and its really igniting a fire in me to get cptsd even more on the scene. I was just talking to a friend the other day and yep he has been given this often negativey seen diagnosis ..
Im so motivated right now to use all available resources to stand up for cptsd support and  treatment .. I shall post my journey under treatment as i go along ..