Very Fragile

Oh, the conflict is that two specialists and my registered nurse, emphatically agreeing that I have encephalopathy resulting in bipolar symptoms and that has been the case for the past three months. I have also responded very well to a treatment for encephalopathy. My GP insists it is bipolar (after saying she "didn't know what it was" last fortnight - this fortnight I mentioned what she had said last fortnight and she clarified that she was referring to something else and it was a misunderstanding, which is far enough). I have no problem with being re-dx'd as bipolar in that it is all the same symptoms anyway. The thing that I disagreed with was that the metabolic specialist put the horse before the cart and then closed the file without explanation. She is trying to say that is a bipolar symptom. I showed her the notes from my appt with her.... everything he said, what he thought it was, that he would refer me to the liver transplant unit. He didn't do the tests and closed off my chart without explanation. Now she is trying to make out that it was me who put the cart before the horse and she wanted to put the incident in her referral letter as an example of bipolar. I found it really hurtful, the specialist promising so much and delivering so little... and my other specialist saying that with that outcome I had 9-15months to live. Then that specialist retires and I'm being made out to have made it all up. If putting the cart before the horse is a symptom of bipolar, well the metabolic specialist has it. The argument is over her clinical judgement that because I have other bipolar symptoms that I must be wrong on this one. It is a heartbreaking double whammy. Not only was I poorly treated by the specialist, I have false attributes being assigned to me BECAUSE HE DIDN'T DO WHAT HE SAID HE WOULD DO. My GP wanted to put that in her referral letter and I felt that it was giving a completely false picture than the facts of the matter. I have gone to hell and back because of that metabolic specialist. Like my carer said, the metabolic specialist is no better than a groom who leaves you at the alter. But it is more painful because he was promising me the chance to get my life back. He totally lets me down and now my GP is metaphorically saying to me "he never proposed to you in the first place, you made it all up". This is my life, my health. I didn't make the specialist say the stuff he did - and then leave me high and dry. It is absolutely soul destroying what he did. I want be well so badly - and creating lies is hardly the fastest way to get there. I resent the inference and her desire to make that part of my referral sooooooooooooooooooooooo badly. As an abuse survivor I have learnt to throw off stuff that doesn't sit right, that people want to have me believe about myself. I was dx'd with bipolar a few years ago and despite what they call "bipolar blindness", I could see all the symptoms that the pdoc pointed out in me. They felt "right". This doesn't feel right at all. I am extremely driven and I do fast track things as much as I can (which can be seen as a bipolar symptom) - but I still stick to the truth and the facts 100% while doing so. Possibly I need to see being driven and fast tracking as the bipolar trait and leave the inference of lying out of it. That is a pretty offensive accusation in itself but to have my doctor think that I misrepresented such important medical realities is painful, but not as painful as the way that doctor essentially betrayed me... told me such widespread liver pathway failures could only be treated by a liver transplant and that he would do the labs and refer me straight to liver transplant unit. He didn't do the testing he said he would do and closed off my chart. I was so incredibly distraught and my other specialist was the one saying that if he is indeed correct in his diagnosis and you are being refused treatment options, your prognosis based on all your health conditions and your body's inability to metabolise medications to treat them your prognosis is 9-15 mths. I was completely shocked, shattered and angry. I was not going to let myself die because of this one doctor... I wasn't going to give him that much power. Even though I can own that I am driven and expedient, I will never accept responsibility for the medical negligence of that doctor. Regardless, his lack of treatment or referral still brings with it the inability to treat all my chronic life threatening conditions of which bipolar with delirium (or encephalopathy) is only one, hence second specialists made the prognosis based on the first specialists diagnosis and lack of treatment. Non of my conditions just go away because they are untreatable - they exacerbate. Even though enceph treatment have alleviated symptoms, the GP doesn't want to hear about it. I am intelligent but I am so confused. But I am also really distraught. I have been treated really unprofessionally by the metabolic specialist and he has been the catalyst of three months of me getting my affairs in order based on the second specialists prognosis. Yes the conflict with my GP is a concern but the biggest concern is the total mess the medical profession have made of my case. I don't know who to believe. My carer had a similar thing with her mother. They told her her cancer was gone, only to tell her the next week they had got it wrong and she was terminal. She has since passed :(. They did the same to me 5 years ago but with a happier ending. They told me I still had cancer before Xmas and retested me again after Xmas and happily informed me it was a false positive - the surgery had got all the cancer. They indicated that in some cases it can take quite awhile after surgery for the blood to not have the cancer indicators in it, even when it has all been removed. I haven't had any trouble since.
But even that news before Xmas was NOTHING near as bad as the ordeal I have gone through in the past three months. With the cancer, they didn't send me away telling me I'd made up the diagnosis. They cut a dirty great tumor out of me and although blood tests still showed up cancer, subsequent tests were all clear . There was no malpractice or false information. This, on the other hand has been nothing more than a complete and utter cock up and I still have a plethora of serious illness not being treated regardless of what unique way each medical practitioner wants to look at it. That is the problem. Being blamed for the cock up merely adds insult to what has been the most turbulent medical experiences in my entire life. I'm angry. I am sad. I'm confused. I'm not about to be attacked for it as well.

Thanks UA. I'm heading to bed now. Im feeling much better than when I wrote this. I process things fast. I'm going to take 2 1/2 days mental break from it. There are some things to clarify here but I'll do that Mon. Hugs xo

Hey, it is only the one GP - this one - who has taken back my prognosis. I THINK she is trying to say that my delirium is psychosis. Hey she may be right and the very competent psychiatrist of 5 years wrong, but the GP would be only getting to the "right" answer by total fluke because everything she is basing her "clinical assessment on is flawed" My pdoc warned me about her when I first started seeing this GP and I thought it unusual. I now know why. The gp is well meaning and to her credit has only done this in the vacuum of my psychiatrist no longer practicing. However she had already formed her opinions while I had a psychiatrist. No amount of evidence will change her opinion and I feel she has overreached as a GP.

I have known for years that BP2 may turn into BP1 especially when it is unable to be treated and have been ready to accept new and exacerbated symptoms. It is possible that delusions may start to creep in but that is not what happened here. I was so highly delirious with my appt with the metabolic specialist that I wrote copious notes and rechecked them with the specialist. I wanted to get it right. Now because he failed to do what he said he would do, it is inferred that what he said we was going to do was some kind of psychosis on my part. I feel really betrayed by my GP. I think she genuinely believes she is right. I don't think she's purposely trying to be damaging.

I have gone to hell and back because of medical incompetence in the past 3 months. It is extraordinary painful for me and I think I need to let myself feel the pain of that journey, rest up and try to recuperate.

I was planning to not think about it over the weekend but I got the sensation like a darn with the pressure building up. Maybe I should try to do one pleasurable thing a day but leave the rest of the day to resting and licking my wounds. Her judgement based on her colleagues malpractice, just makes me feel she is pinning the failures of other doctors on me just because they are doctors and I have a history of depression, anxiety and delirium. I don't feel she is trying to scapegoat me, but she has put way too much confidence in the other doctor's competent handling of my case. These are two doctors who I have met once each. I am psychotic in the eyes of my GP because the misinformation of an Indian doctor who could not speak English and who I made an immediate complaint about. I am disappointed she didn't raise her concerns with me. I could have clarified the situation immediately. Instead she let this really bad experience I had with this after hours Indian GP form the basis of her clinical assessment.

I'm going to ask my old practitioners (GP and pdoc) on Monday if I can come back to them. They are in another city but they know me so well. They will be able to determine whether psychosis has crept in - via their own clinical assessment - based on what they see, not what they hear. I don't want to ignore a symptom if I have it, but I don't also want to take on a false psychiatric symptom if I don't have it.

It has been a bruising 3 1/2 months. I won't let this GP harm me further but I will take on what she has to say and check it out with doctors I trust (if I can see them again).

Back again. I fell asleep with my lay down. I missed the call back because I was asleep. When I woke up went and saw a movie and rang the counselling service when I got back. I'm still trying to balance not suppressing with not ruminating and allowing myself to feel like crap while still doing things that will make me feel a little better. I've got 6 hours to fill before the earliest bedtime possible. I have managed such difficult situations over the past 3 months. The sledgehammer dx based on one off hearsay, her insistence and her anger has been really harmful to me. She has read more into everything I've told her based on that one non English speaking doctor, without clarifying the situation with me. I feel really harmed by the medical system right now.

LW, it can be hard when we have a doc and there's not trust or they don't understand us.

Did you get through to the counselor when you called back? I hope you did. I'm glad you were able to get some rest as well.

Movies are nice. I haven't been out to see a movie since last year February. I hope you had a good time at the movies.

Please feel free to post and respond as well . Posting does help make you feel better. I hope things will get better. Take it easy for the remainder of your weekend/Sunday.

UA

I spoke to a crisis counsellor not attached to the program I'm in and I found him absolutely astonishingly fantastic. He claims that GP cannot make psychiatric dx's, that they can only make other medical dx's - that they are not psychiatrically trained. I don't know if that is the case because there are a lot of GP's who are able to dx and treat garden variety depression, so I don't know of the demarcation there. I will ring my last pdoc who left her practice in Dec and ask her. I will find how close she is to setting up practice again. Depending on how that call goes, I will put in a call to my previous pdoc and be seen as an emergency. I have a fortnight to work out what to do about a GP and that is something I can do when my mood and cognition improve. I'm enjoying hypersomnia atm, which means I've slept a lot today. I've had nightmares but it is still much easier to manage nightmares than the amount of distress my waking mind and body is in atm. The crisis counsellor really helped ground myself and put my mind in neutral. That is the trick for the next few days until I bounce back again.

Post Edited (Living Well) : 2/9/2014 5:35:41 PM (GMT-7)

I edited out my typo of "didn't" ... that might make it a little less confusing lol.
The counselor on the crisis line was very helpful and supportive - and I did feel a lot better after talking to him. Day 2 after a PTSD incident is always the hardest. I rang my psychologist practice and spoke to the manager and told her that I had requested that notes from the weekends call not be forwarded as I wanted to give first hand information. I just got hold of my old psychiatrist's receptionist (who is going with my pdoc and she will call me on Monday or Tuesday next week to make appt for me). I have let her know it is quite urgent. I have a new carer who is starting today, who I am quite anxious about. I don't get anxious about things usually but she seems she could be quite a hard person and I'm very fragile atm. I have organised with my pharmacy to change the way we do things. I keep my own scripts and medication and I get them filled when I need. They only brought it up to me it wasn't working for them yesterday. It wasn't working for me either, so it looks like this might be a win/win solution. Baby steps.

LW, I'm glad to know that you're doing a bit better. It sounds like you have a very nice and helpful carer. Hope you will continue to feel better

Have a good day/night!

UA

I'm sorry that it didn't work out with your other GP. I hope your new GP will be good as well.

Posting here does help indeed .

Take it easy. I hope you will feel better.

UA

My physical and emotional health are still quite low. I cleaned my office to give myself a sense of accomplishment.

Nice little trip to psych today. The psych nurse was really lovely. He said that I was low risk with massive PTSD from the GP visit. He said for my long term wellbeing I would need to find an alternative GP. He reassured me that I am never this bad and that I will return to coping soon. It was good to be reminded because I had forgotten that I usually cope very well and any memories of that were negated by the thought "well things are different now, they have got permanently worse". He reminded me the PTSD was temporary although it was very severe. He reminded me that the GP could only make things permanently worse if I stayed with her and I had total control over that decision. He made me say out loud after him. "The GP was wrong. I have delirium and I don't have psychosis." She is well meaning and committed to my care - and what is most important is she doesn't know that despite being a good doctor, she doesn't have the capacity to manage my complex case.
So the diagnosis remains:
a) comorbid psychiatric diagnoses (bipolar 2 and complex PTSD)
b) along with metabolic issues preventing treatment
c) neurological phenomena (delirium) from a undiagnosed physical non-brain origin.
I haven't been able to speak to the specialist about the prognosis given two months ago but will be hopefully next week. Nothing's changed, just got a whole lot more confusing if anything. With a hefty dose of PSTD on top... and yes, a symptom of PSTD is talking about the same thing over and over and over. Yes I could go to the Anxiety forum, but I figure most people with bipolar have experienced trauma - and if I spread myself out according to my symptoms and dx's I would feel like a dispersed drifter with no "home". I like bp being my home forum.

Yay!!!! I finally woke up heaps better today and no nightmares last night! YAY!
I will still take it easy but it is such a relief to be out of the horror of fullblown PTSD!